Now available. Read our 2025 Impact Report
Now available. Read our 2025 Impact Report
| Titlename | Link | File Type | Description | Library Categories | Library Tags | Language | hf:tax:library_category | hf:tax:library_tag | |
|---|---|---|---|---|---|---|---|---|---|
| What BetterLife Data Tell Us About Genetic Testing in FSHD | Blog | A review of recent peer-reviewed research on diagnostic delay and misdiagnosis compared with the survey responses on BetterLife FSHD. | Research | BetterLife FSHD, Genetic Testing | English | research | betterlife-fshd genetic-testing | ||
| Loving Through Life with FSHD - A Conversation with Kathy Chase | Podcast | Kathy Chase shares personal reflections on life as an FSHD carepartner and how living with FSHD deepened her marriage. | Living with FSHD | Care Partner, Families, Stories | English | living-with-fshd | care-partner families stories | ||
| Project Mercury Update: Three Years of Global Collaboration and What’s Next | Video | Overview of what Project Merciury accomplished through international, patient-led, coordinated collaboration. This webinar offers insight into the strategic priorities for the year ahead and how Project Mercury will transition into a sustainable global platform within the World FSHD Alliance ecosystem. | FSHD Society Information | English | fshd-society-information | ||||
| Working with FSHD: Navigating Vocational Rehabilitation Services with Marisa Spain, FSHD University | Video | Informational presentation about workplace accommodation and support services available in the United States and how to navigate the system with confidence. | Living with FSHD | Disability Benefits, Disability Rights | English | living-with-fshd | disability-benefits disability-rights | ||
| Designing a Home for Every Body: FSHD Wellness Hour with Jane Nemke | Video | Informational presentation about applying universal design to creating/remodeling a home that enables individual with FSHD to live their best lives. Covers the difference between accessible and universal design and provides a variety of visual examples and personal strategies. | Living with FSHD | Home Renovation | English | living-with-fshd | home-renovation | ||
| Employment Rights 101: Disability Protections and Navigating the Workforce with FSHD, Marisa Spain | Video | Informational presentation of Title I of the Americans with Disabilities Act (ADA) and its implications for workers with disabilities. This session will explore key considerations for people with FSHD—such as requesting reasonable accommodations from an employer and understanding disclosure during the hiring process. | Living with FSHD | Advocacy, Disability Benefits, Disability Rights | English | living-with-fshd | advocacy disability-benefits disability-rights | ||
| Travel Without Limits: Exploring the World with FSHD, FSHD University, Mollie Garrett | Video | Informational presentation about accessible travel planning, preparing for travel with FSHD, and why to not let FSHD stop you from exploring. | Living with FSHD | Travel | English | living-with-fshd | travel | ||
| FSHD Connect: How the Conference Brings the FSHD Community Together | Blog | Personal reflection on how participating in FSHD related events, such as the Connect Conference, creates vital community connections and support networks while increasing access to educational resources and trial information | Living with FSHD | Education, Events, Social Support, Stories | English | living-with-fshd | education events social-support stories | ||
| Why the FSHD Progression Survey Matters | Blog | Overview of the FSHD Progression Survey conducted in BetterLife FSHD: what it measures and how this relates to Clinical Severity Score | Research | Basic Research | English | research | basic-research | ||
| Waiting Seems to Be the Hardest Part | Blog | Personal reflection on the use of pillows and other aids to get from sitting to standing | Living with FSHD | Lifts & Hoyers, Wheelchairs | English | living-with-fshd | lifts-hoyers wheelchairs | ||
| New Study Shows FSHD Has a High Cost - And the Real Cost Is Likely Even Higher | Blog | Overview of a recent health economics study of health insurance claims related to FSHD care | Living with FSHD | Insurance | English | living-with-fshd | insurance | ||
| Epicrispr Reports First Clinical Evidence of Increased Lean Muscle Volume in Patients with FSHD Following Treatment with EPI-321 | Blog | Research update from Epicrispr on their Phase 1/2 trial of EPI-321. | Research | Clinical Research, Clinical Trials, Drug Development | English | research | clinical-research clinical-trials drug-development | ||
| Three Years. Ten Countries. One Shared Mission…What We Built Together | Blog | Mark Stone reflects on the progress and collaboration of Project Mercury in it’s first 3 years (2023-2025). | FSHD Society Information, Research | Advocacy, Clinical Trials, Drug Development | English | fshd-society-information research | advocacy clinical-trials drug-development | ||
| Volunteer Spotlight – Rick Whitehead - Knoxville, TN | Blog | Profile of volunteer Rick Whitehead about Gathering Place leadership, art, and life with FSHD. | Living with FSHD | Stories | English | living-with-fshd | stories | ||
| Living Beside FSHD: World FSHD Day Stories | Blog | Kathy Chase shares her perspective on being the carepartner of her husband, who lives with FSHD. | Living with FSHD | Stories | English | living-with-fshd | stories | ||
| Chasing Justice and Butterflies: Ed Barocas Reflects on a Life of Purpose, Humor, and Hope | Blog | Profile of lawyer Ed Barocas and his new memoir about life with FSHD. | Living with FSHD | Stories | English | living-with-fshd | stories | ||
| Colleen's Story: World FSHD Day Stories | Blog | Colleen shares her perspective on life with FSHD. | Living with FSHD | Stories | living-with-fshd | stories | |||
| Why I joined BetterLife: A Q&A with Robert (Bob) Humphreys Jr. | Blog | Bob shares his perspective on life with FSHD and why he joined the BetterLife FSHD research study. | Living with FSHD | Advocacy, BetterLife FSHD, Research Motivation, Stories | English | living-with-fshd | advocacy betterlife-fshd research-motivation stories | ||
| A Mother's Perspective: World FSHD Day Stories | Blog | Erin shares her perspective about life as a caretaker of a child with FSHD. | Living with FSHD | Families, Stories | English | living-with-fshd | families stories | ||
| My FSHD Journey: From Fear to Hope, World FSHD Day Stories | Blog | Taylor Quigg shares her experiences living with FSHD and the hope participating in a clinical trial provided. | Living with FSHD | Families, Research Motivation, Stories | English | living-with-fshd | families research-motivation stories | ||
| Novartis Announces Positive Biomarker Results for Del-brax in FSHD | Blog | Update from Novartis re: del-brax meeting primary and key secondary study endpoints and showing positive effects on reducing muscle injury | Medical, Research | Clinical Research, Clinical Trial, Drug Development | English | medical research | clinical-research clinical-trial drug-development | ||
| A Glimpse into Mental Health in FSHD: Early Insights from BetterLife | Blog | Insights from the BetterLife FSHD study re: prevalence of depression and mental health concerns in the FSHD Community via self-reported data from study participants | Mental Health, Research | Anxiety, Basic Research, Depression, Social Support | mental-health research | anxiety basic-research depression social-support | |||
| What a New Study on FSHD and Mortality Means for Our Community | Blog | Overview of a 2026 literature review of research on FSHD mortality rates and how FSHD accelerates mortality with much ground for future research. | Living with FSHD, Medical, Research, Wellness | Basic Research, Breathing Problems, Early Onset or Infatile, Genetic Testing, Heart Health, Lung Health, Research Motivation | English | living-with-fshd medical research wellness | basic-research breathing-problems early-onset-or-infatile genetic-testing heart-health lung-health research-motivation | ||
| College is Possible, Preparation is Necessary | Blog | Advice for how to prepare for college when you have FSHD especially though ADA-support and self-advocacy | Living with FSHD | Adovocacy, Education, Families, Social Support, Teens | living-with-fshd | adovocacy education families social-support teens | |||
| Travel Without Limits: Exploring the World with FSHD, FSHD University, Mollie Garrett | Video | Mollie Garrett, a travel expert who specializes in accessible travel for individuals with disabilities and who brings her own lived experience as a traveler with FSHD, will share her personal journey navigating the world with FSHD, along with practical tips that make travel more accessible, enjoyable, and less intimidating. | Living with FSHD | Travel | English | living-with-fshd | travel | ||
| Yoga for FSHD | Blog | For many people, yoga, meditation, and breathwork can be meaningful additions to a tool kit of strategies that support both body and mind—offering gentle, adaptable practices that promote relaxation, reduce stress, and support overall well-being. | Living with FSHD, Wellness | Exercise, Meditation, Mindfulness, Physical Therapy | English | living-with-fshd wellness | exercise meditation mindfulness physical-therapy | ||
| Manifestaciones cardíacas en FSHD | Website | Revisión sobre afectación del corazón en casos de FSHD | Medical | Heart Health | Spanish | medical | heart-health | ||
| Embarazo en FSHD | Website | Recomendaciones para el control médico del embarazo | Medical | Genetic Counseling, Pregnancy | Spanish | medical | genetic-counseling pregnancy | ||
| Fatiga en FSHD | Website | Cuatro artículos sobre importancia de la fatiga en pacientes FSHD | Medical | Fatigue | Spanish | medical | fatigue | ||
| Hormona de crecimiento en Distrofias Musculares | Website | Utilización de la hormona del crecimiento (GH) con fines terapéuticos | Medical | Drug Development | Spanish | medical | drug-development | ||
| Trastornos respiratorios del sueño en FSHD | website |
| Medical | Breathing Problems | Spanish | medical | breathing-problems | ||
| Terapia génica en FSHD | Tratamiento génico en FSHD | Research | Drug Development | Spanish | research | drug-development | |||
| The FSHD Society, SOLVE FSHD, and the FSHD CTRN Announce Launch of Industry Collaborative to Improve FSHD Clinical Trials | Blog | Now launched: The FSHD Industry Collaborative is a first-of-its-kind, multi-stakeholder initiative designed to improve how FSHD clinical trials are designed, executed, and evaluated | FSHD Society Information | Basic Research, Clinical Research, Clinical Trials, Drug Development, Research Motivation | English | fshd-society-information | basic-research clinical-research clinical-trials drug-development research-motivation | ||
| FSHD Advocate: 2026 Issue 1: The Tipping Point, What you do matters | Magazine | The latest issue of FSHD Advocate covers clinical trial updates, engaged volunteer leaders, details about the 2026 Walk & Roll to Cure FSHD campaign, a review of the February Volunteer Leadership Summit, and much more | FSHD Society Information, Living with FSHD, Medical, Research, Wellness | Advocacy, Basic Research, Clinical Research, Clinical Trials, Education, Mental Health | English | fshd-society-information living-with-fshd medical research wellness | advocacy basic-research clinical-research clinical-trials education mental-health | ||
| Expanded Access Crash Course with Ally Roets and Dr. Michelle Mellion, FSHD Straight Talk | Video | A crash course into Expanded Access, which alows folks living with rare diseases to request access to experimental drugs (those in clinical trials) even if they did not meet the clinical trial inclusion criteria. | Living with FSHD, Research | Basic Research, Care Partner, Clinical Research, Clinical Trials, Drug Development, Early Onset or Infatile, Families, Mental Health, Research Motivation | English | living-with-fshd research | basic-research care-partner clinical-research clinical-trials drug-development early-onset-or-infatile families mental-health research-motivation | ||
| Fall Prevention, Part 2 with Frank Hanley, Feeling Fit with FSHD | Video | This webinar covers: –a review of how deliberate, well-placed steps can improve stability, reduce risk, and make movement safer, even for those with limited mobility Using slow, deliberate motions to train both the body and the mind to work together to improve balance, boost confidence, and reduce the likelihood of falls. | Living with FSHD, Wellness | Exercise, Fall Prevention, Foot Drop, Hip and Upper Leg Weakness, Lower Leg and Ankle Weakness, Mindfulness, Mobility, Occupational Therapy, Physical Therapy, Walkers | English | living-with-fshd wellness | exercise fall-prevention foot-drop hip-and-upper-leg-weakness lower-leg-and-ankle-weakness mindfulness mobility occupational-therapy physical-therapy walkers | ||
| Preventing Falls, Part 1: Moving with Balance, Awareness, and Intention, FSHD University with Frank Hanley | Video | Practical strategies to improve balance, stability, and confidence while reducing the risk of falls | Living with FSHD | Exercise, Fall Prevention, Foot Drop, Hip and Upper Leg Weakness, Lower Leg and Ankle Weakness, Mindfulness, Mobility, Occupational Therapy, Physical Therapy, Walkers | English | living-with-fshd | exercise fall-prevention foot-drop hip-and-upper-leg-weakness lower-leg-and-ankle-weakness mindfulness mobility occupational-therapy physical-therapy walkers | ||
| Early Onset Insight: Findings from Dr. Erasmus’ 5yr Early Onset Study - Oct 2025 Parents' Roundtable | Video | Dr. Corrie Erasmus, a leading FSHD researcher from the Netherlands. Dr. Erasmus will present findings from her groundbreaking 5-year study on early onset FSHD, one of the most comprehensive studies of its kind. Her research offers valuable insights into the progression, challenges, and care needs of children and adolescents living with FSHD, and has the potential to shape future standards of care and clinical research. | Research | Basic Research, Care Partner, Clinical Research, Clinical Trials, Early Onset or Infatile, Families, Tee, Teens | English | research | basic-research care-partner clinical-research clinical-trials early-onset-or-infatile families tee teens | ||
| Whole Body MRI Measures in Pediatric FSHD Patients - November 2025 Parents' Roundtable | Video | Dr. Silvia Blemker, and colleagues, joins us for a discussion about the uses of MRI in tracking FSHD progression in pediatric FSHD patients. Dr. Blemker represented Springbok Analytics during this conversation. | Medical, Research | Basic Research, Clinical Research, Early Onset or Infatile, Research Motivation | medical research | basic-research clinical-research early-onset-or-infatile research-motivation | |||
| The Burden of FSHD - FSHD University with Amanda Hill and June Kinoshita | Video | This webinar shares findings from two key studies: an analysis of a large U.S. medical claims database and insights from the TrueCost of FSHD and Voice of the Patient surveys. Join us to learn what these data reveal about the real-world cost of FSHD and how this knowledge can inform advocacy, insurance coverage, and future support for our community. | Living with FSHD, Medical, Research | Advocacy, Education, Finances, Insurance, Mental Health | English | living-with-fshd medical research | advocacy education finances insurance mental-health | ||
| Understanding Gene Therapy in FSHD, FSHD University | Video | This FSHD University webinar will take a closer look at how gene therapy is being developed to target the root cause of FSHD. Our presenters will explain the science behind gene therapy, including how it works and what makes it a promising approach for treating FSHD. The session will also explore the use of adeno-associated virus (AAV) as a delivery method in gene therapy, and what factors patients should consider before joining a clinical trial—such as eligibility, safety, and long-term follow-up. Finally, Epicrispr will share updates and answer questions about their investigational FSHD therapy, EPI-321, currently in development. | Medical, Research | Basic Research, Clinical Research, Clinical Trials, Drug Development | English | medical research | basic-research clinical-research clinical-trials drug-development | ||
| 2025 Annual Drug Development Update with Dr Lawrence Korngut | Video | An up-to-date overview of ongoing studies, emerging therapies, and what’s on the horizon for treatment options | English | ||||||
| AMA: Answering Your Questions About FSHD | Video | Amanda Hill, Dr. Lucienne Ronco, and Dr. Michelle Mellion answer questions about how to effectively describe pain to your care providers, how AI is advancing or assisting FSHD research and drug development, and more. | Living with FSHD | Advocacy, Basic Research, Clinical Research, Clinical Trials, Education, Pain | living-with-fshd | advocacy basic-research clinical-research clinical-trials education pain | |||
| Mind-Body Connection: Using Mindfulness & Relaxation Techniques to Improve Well-being with Sixto | Video | an engaging FSHD University webinar with Sixto Garcia, M.A., LMFT, as he explores the powerful connection between the mind and body. Learn practical techniques—including mindfulness, meditation, breathing exercises, and stress-reduction strategies—to help you manage the emotional challenges of living with FSHD while supporting overall well-being. Designed for both patients and caregivers, this session will provide simple, effective practices you can use to bring more balance, calm, and resilience into your daily life. | Wellness | Meditation, Mental Health, Mindfulness | wellness | meditation mental-health mindfulness | |||
| FSHD 101: An Easy Explanation | Video | In this new video, Amanda Hill, Research & Care Programs Officer at the FSHD Society, breaks down molecular biology and the genetic cause of FSHD (FacioScapuloHumeral Muscular Dystrophy) into easy to understand concepts. This video covers: DNA, RNA, and protein creation; transcription and translation processes; how FSHD affects these processes; how this causes FSHD symptoms; and how this knowledge guides research. | Research | Basic Research, Clinical Research, Education | English | research | basic-research clinical-research education | ||
| Occupational Therapy for Real Life: Home/Daily Living Solutions for People w/ FSHD, FSHD University | Video | In this FSHD University webinar, licensed occupational therapist Cindy Lourie draws on 30 years of clinical experience to walk participants through practical strategies for thriving with FSHD. Cindy will share how OTs can support both patients and caregivers, offer examples of meaningful home modifications, demonstrate mobility and daily living solutions, and discuss lifestyle “hacks” that make daily routines easier, safer, and more accessible. | Medical, Wellness | Adaptations, Fall Prevention, Mobility, Occupational Therapy | English | medical wellness | adaptations fall-prevention mobility occupational-therapy | ||
| Life Insurance Options for Individuals with FSHD with Robert Bland, CEO LifeQuote, FSHD University | Video | Overview of life insurance options that may be available and the key factors individuals with FSHD should consider when exploring coverage. This session will break down common misconceptions, discuss different types of policies, and offer practical guidance to help patients and families make informed financial decisions for the future. Whether you’re just starting to look into life insurance or want to better understand your choices, this webinar will provide clear, patient-focused insights. | Living with FSHD | Advocacy, Education, Insurance | living-with-fshd | advocacy education insurance | |||
| Passport to Readiness: Preparing for Future FSHD Treatments - Ashley Ferreira, FSHD Society | Video | In this presentation, Ashley Ferreira, Director of Education at the FSHD Society, overviews how to make sure you are ready for when an FSHD treatment becomes available. Ferreira introduces the Readiness Passport or Treatment-Ready Checklist: 7 steps to ensure you aren’t waiting years for treatment. In addition, Ferreira covers how to avoid roadblocks – timing and finances – and the difference between an available treatment and an available cure. | Living with FSHD, Medical, Wellness | Advocacy, Education, Research Motivation | English | living-with-fshd medical wellness | advocacy education research-motivation | ||
| Employment Rights 101: Disability Protections and Navigating the Workforce with FSHD, Marisa Spain | Video | Disability rights advocate Marisa Spain provides a clear and practical overview of Title I of the Americans with Disabilities Act (ADA) and its implications for workers with disabilities. This session will explore key considerations for people with FSHD—such as requesting reasonable accommodations from an employer and understanding disclosure during the hiring process. Marisa will also share direct self-advocacy strategies and information about what actions you can take if you think you have experienced disability related discrimination from an employer. | Living with FSHD | Advocacy, Disability Benefits, Disability Rights | English | living-with-fshd | advocacy disability-benefits disability-rights | ||
| Letter to the FSHD Community from Roche | Blog | Roche announcement: GYM329/emugrobart program is halted; no favorable results from trial. | English | ||||||
| Roche stops development of Emugrobart | Blog | Roche announcement: GYM329/emugrobart program is halted; no favorable results from trial. | Medical, Research | Clinical Research, Clinical Trials | English | medical research | clinical-research clinical-trials | ||
| Mirecule Expands Strategic FSHD Collaboration with Sanofi | Blog | miRecule announced its expansion of its strategic collaboration with Sanofi to develope a best-in-class Antibody RNA Conjugate (ARC) aimed at suppressing DUX4. | Medical, Research | Basic Research, Clinical Research, Clinical Trial, Drug Development | English | medical research | basic-research clinical-research clinical-trial drug-development | ||
| How do hormones impact muscle function in FSHD? | Blog | Overview of recent research into the effects of estrogen and phytoestrogens on FSHD progression and the importance of includng phytoestrogens (soy foods) in nutrition | Living with FSHD, Research, Wellness | Basic Research, Clinical Research, Diet and Nutrition, Supplements, Women | English | living-with-fshd research wellness | basic-research clinical-research diet-and-nutrition supplements women | ||
| Sarepta’s letter to the FSHD community | Blog | Sarepta shared first-in-human clinical data from the company’s SRP-1001 FSHD program: favorable safety profile; evidence of suppression of genes regulated by DUX4; and reduction in creatine kinase levels. | Research | Basic Research, Clinical Research, Clinical Trials, Drug Development | English | research | basic-research clinical-research clinical-trials drug-development | ||
| The Better Nutrition for FSHD Diet | Blog | Overview of lead contamination levels in common protein powders and the effects of this contamination on FSHD progression and nutrition | Living with FSHD, Research, Wellness | Diet and Nutrition, Patient Guidelines, Supplements | English | living-with-fshd research wellness | diet-and-nutrition patient-guidelines supplements | ||
| Organizations Join Forces to Map How Human Muscle Regenerates |
| Blog | Muscular Dystrophy Association-led research collaboration with FSHD Society, LGMD2L Foundation, and Parent Project Muscular Dystrophy to fund Abigail Mackey, PhD, at Copenhagen University Hospital to decode muscle regeneration. | Medical, Research | Basic Research, Clinical Research, Clinical Trial, Clinical Trials | English | medical research | basic-research clinical-research clinical-trial clinical-trials | |
| Scholar Rock Highlights 2026 Strategic Priorities | Blog | Scholar Rock is focused on three core strategic priorities in 2026 to create sustainable long-term value and maximize the potential of its innovative anti-myostatin platform to serve patients. This includes a Phase 2 clinical trial for FSHD following FDA approval of their IND application. | Basic Research, Clinical Research, Clinical Trial, Drug Development | English | basic-research clinical-research clinical-trial drug-development | ||||
| Epicrispr Reports Early Clinical Activity and Favorable Safety Profile in First-in-Human Epigenetic Editing Study for FSHD | Blog | Epicrispr Biotechnologies a clinical-stage company pioneering gene-modulating therapies, today reported early clinical data from its ongoing first-in-human, open-label study evaluating EPI-321, an investigational epigenetic therapy for facioscapulohumeral muscular dystrophy (FSHD). They will present more information on Jan. 13, 2026 at the J.P. Morgan Healthcare Conference. | Research | Basic Research, Clinical Research, Clinical Trials | English | research | basic-research clinical-research clinical-trials | ||
| RESTEM Announces First-Patient-Dosed in the Phase 1/2a Study of Restem-L in Facioscapulohumeral Muscular Dystrophy | Blog | First patient with FSHD dosed with Restem-L umbilical lining modified progenitor cells (UMPCs). The Phase 1/2a study will evaluate the safety and preliminary efficacy of Restem-L in patients with FSHD. The study is funded by SOLVE FSHD. | Research | Basic Research, clinical, Clinical Research, Clinical Trials, Drug Development | English | research | basic-research clinical clinical-research clinical-trials drug-development | ||
| Driving Breakthroughs for FSHD Treatments | Blog | The Therapeutic Accelerator is an initiative that unites researchers, regulators, pharmaceutical companies, clinicians, industry partners, and patients. Together, we are building the knowledge, infrastructure, and advocacy needed to overcome the unique challenges of FSHD drug development. | FSHD Society Information, Research | Basic Research, Clinical Research, Clinical Trials, Drug Development | English | fshd-society-information research | basic-research clinical-research clinical-trials drug-development | ||
| Understanding the Physiatrist’s Role in FSHD Care | Blog | Many patients have never heard of a physiatrist, and when they do, they ask themselves, “What do they do?” There ayet they can be critical for FSHD care. Dr. Nassim Rad discusses how a physiatrist’s focus isn’t on diagnosing FSHD, but on helping people function better, manage symptoms like pain and fatigue, and maintain independence as the disease progresses. | Living with FSHD | Alternative Therapies, Find a Doctor, Mobility, Newly Diagnosed | English | living-with-fshd | alternative-therapies find-a-doctor mobility newly-diagnosed | ||
| Living with FSHD can feel hopeless, but there are real ways to make a difference |
| Blog | Sam Feldman shares reflections on how to get involves and make a difference after attending an August 2025 San Diego Chapter Meeting. | FSHD Society Information, Living with FSHD, Mental Health | Advocacy, Drug Development, Social Support, Stories, Walk and Roll | English | fshd-society-information living-with-fshd mental-health | advocacy drug-development social-support stories walk-and-roll | |
| More Laughter, More Love: Reflections on an inter-abled relationship |
| Podcast | Loving someone with FSHD means loving someone through constant change, a path that Leah & Joe have traveled together since they met in 8th grade. Despite coming from a family with FSHD, Joe faced a long diagnostic journey filled with uninformed and misinformed care providers, leading the couple to do their own research with considerable trial and error. In this episode they discuss the importance of community support, how to adapt, supplements and vitamins, why you need to hydrate, and so much more. Married for 15 years and together for 20, Leah & Joe’s partnership proves their philosophy: when living in an inter-abled relationship, what you really need is more laughter and more love. | Mental Health | Adaptations, Care Partner, Families, Relationships, Social Support, Stories | English | mental-health | adaptations care-partner families relationships social-support stories | |
| Epicrispr Biotechnologies Doses First Patient in First-in-Human Clinical Trial of EPI-321 for Facioscapulohumeral Muscular Dystrophy | Press Release | Epicrispr Biotechnologies, a clinical-stage company pioneering gene-modulating therapies, today announced that the first patient has been dosed in its global first-in-human clinical trial of EPI-321, an investigational, one-time epigenetic editing therapy for facioscapulohumeral muscular dystrophy (FSHD). – EPI-321 is the first investigational therapy designed to silence DUX4 expression via epigenetic modulation – FDA has granted Fast Track, Rare Pediatric Disease, and Orphan Drug Designation for EPI-321 in FSHD | Living with FSHD, Research | Clinical Research, Clinical Trials, Drug Development, Press Releases | English | living-with-fshd research | clinical-research clinical-trials drug-development press-releases | ||
| Breathing with FSHD, a talk by Dr. Joshua Benditt | Youtube Video | This recent FSHD University webinar titled “Breathing with FSHD” features Dr. Joshua Benditt, a pulmonary and critical care expert at the University of Washington. He provides a comprehensive overview aimed at helping FSHD patients understand and manage respiratory symptoms effectively. | Living with FSHD, Medical | Anesthesia, Breathing Problems, Chest Weakness, Fatigue, Lung Health | English | living-with-fshd medical | anesthesia breathing-problems chest-weakness fatigue lung-health | ||
| Breaking Down Avidity’s FORTITUDE Phase 1/2 Trial Update | Blog | On June 24, 2025, Avidity Biosciences, alongside Dr. Nicholas Johnson, presented the much‑anticipated topline results from the FORTITUDE Phase 1/2 study of del‑brax (also known as delpacibart braxlosiran), during an FSHD University webinar. This clinical trial represents a significant step forward in targeting the root cause of facioscapulohumeral muscular dystrophy (FSHD) — and the initial findings are promising. | Medical, Research | Clinical Research, Clinical Trials, Drug Development | English | medical research | clinical-research clinical-trials drug-development | ||
| Inside the 2025 International Research Congress on FSHD: Breakthroughs, Hope, and the Road Ahead |
| Blog | The 2025 International Research Congress (IRC) on Facioscapulohumeral Muscular Dystrophy (FSHD) convened June 12-13 in Amsterdam and online, gathering the world’s leading scientists, clinicians, and industry experts to share the latest advances in FSHD research and therapy development. This year’s congress highlighted not only the accelerating pace of scientific discovery but also the growing momentum toward effective treatments for this challenging and progressive muscle disease. | FSHD Society Information, Research | Basic Research, Clinical Research, Clinical Trials, Drug Development | English | fshd-society-information research | basic-research clinical-research clinical-trials drug-development | |
| "Pediatric FSHD," Euro-NMD, FSHD Webinar Series - Episode 3 | Youtube Video | This Euro NMD–hosted webinar, recorded on Thursday 22 May 2025, delivers a compassionate and clear overview of Pediatric FSHD, featuring expert insights from Prof. Tracey Willis alongside advocates Ally Roets and Corrie Erasmus. Designed for both clinicians and families, it focuses on early diagnosis, tailored care strategies, and supportive resources to help improve outcomes for young patients. | Living with FSHD, Research | Early Onset or Infatile | English | living-with-fshd research | early-onset-or-infatile | ||
| Answering your questions about BetterLife FSHD | Blog | BetterLife FSHD is an innovative platform allowing users to track their symptoms, get matched with clinical trials, and access customized resources about FSHD. This blog overviews the platform and its features. It also includes a link to the full user tutorial. | FSHD Society Information, Living with FSHD | Basic Research, BetterLife FSHD, Clinical Research, Clinical Trials, Education, Newly Diagnosed, Research Motivation | English | fshd-society-information living-with-fshd | basic-research betterlife-fshd clinical-research clinical-trials education newly-diagnosed research-motivation | ||
| Breaking News from Avidity Biosciences | Blog post | June 9, 2025, Avidity initiated the global, confirmatory Phase 3 FORWARD™ clinical trial | Research | Clinical Trials, Drug Development | English | research | clinical-trials drug-development | ||
| How Fulcrum Therapeutics’ Phase 3 REACH Clinical Trial Will Continue to Power the Path Forward |
| Blog | The REACH Phase 3 clinical trial, conducted by Fulcrum Therapeutics, aimed to evaluate the efficacy of losmapimod in treating facioscapulohumeral muscular dystrophy (FSHD). Despite promising results in earlier phases, the trial did not meet its primary endpoint, leading to the discontinuation of the program in September 2024. The recent post-mortem analysis of Fulcrum Therapeutics’ Phase 3 REACH clinical trial, presented by Dr. Jeffrey Statland, offers valuable insights into the challenges and future directions in treating FSHD. Despite the trial’s early termination due to not meeting its primary endpoint, the findings contribute significantly to the understanding of FSHD and the development of potential therapies. | FSHD Society Information, Living with FSHD, Medical, Research | Basic Research, Clinical Research, Clinical Trials | English | fshd-society-information living-with-fshd medical research | basic-research clinical-research clinical-trials | |
| Understanding the FDA’s Orphan Drug Development Program: Why It Matters for FSHD and All Rare Disease Communities | Blog | Rare diseases affect millions worldwide, yet treatment options remain scarce. For families like ours who live with Facioscapulohumeral muscular dystrophy (FSHD) – the journey toward effective therapies is deeply personal. The U.S. Food and Drug Administration (FDA) offers a critical program known as the Orphan Drug Development Program, designed to incentivize drug development for rare conditions. But why should we, as advocates, patients, and caregivers, understand it | Living with FSHD, Medical, Research | Basic Research, Clinical Research, Drug Development, Patient Guidelines | English | living-with-fshd medical research | basic-research clinical-research drug-development patient-guidelines | ||
| 2025 Advocate, Issue 1, Spring | https://www.fshdsociety.org/wp-content/uploads/2025/08/Advocate-2025-issue-1.pdf | FSHD Society Information | Adaptations, Advocacy, Clinical Trials, Drug Development, Find a Doctor, Magazine, Research Motivation, Social Support, Stories | English | fshd-society-information | adaptations advocacy clinical-trials drug-development find-a-doctor magazine research-motivation social-support stories | |||
| Suitcase Tetris, or how to travel with a disability | Blog | Amy Bekier presents tips and tricks for travel including effective packing and safe travel in a power chair. | Living with FSHD, Wellness | Adaptations, Bathroom, Seniors, Travel, Wheelchairs | English | living-with-fshd wellness | adaptations bathroom seniors travel wheelchairs | ||
| Epicrispr Biotechnologies Partners with Springbok Analytics to Integrate AI Muscle Analysis in First-in-Human FSHD Study | Press Release | Epicrispr Biotechnologies, a biotechnology company focused on developing curative therapies, today announced a partnership with Springbok Analytics to incorporate advanced, AI-driven muscle MRI imaging and analysis into its first-in-human clinical trial of EPI-321, a potential first-in-class treatment for facioscapulohumeral muscular dystrophy (FSHD). – Advanced MRI analytics to enhance early signal detection and inform development of first-in-class epigenetic therapy | Medical, Research | Basic Research, Clinical Research, Clinical Trials, Drug Development, Press Releases | English | medical research | basic-research clinical-research clinical-trials drug-development press-releases | ||
| Hope in the Lab: Taking back control of my destiny through research | Blog | Heloise Hoffmann shares her experiences as a researcher living with FSHD, the importance of patient voices, and community support. | Living with FSHD | Advocacy, Basic Research, Clinical Research, Mental Health, Research Motivation, Social Support, Teens, Young Adults | English | living-with-fshd | advocacy basic-research clinical-research mental-health research-motivation social-support teens young-adults | ||
| Epicrispr Biotechnologies achieves milestones in developing groundbreaking therapy for FSHD |
| Press Release | Epicrispr Biotechnologies, a South San Francisco-based biotech company, has announced two major advancements in its mission to develop transformative therapies for genetic diseases. The company secured $68 million in Series B financing and received FDA clearance for its Investigational New Drug (IND) application for EPI-321, a first-of-its-kind epigenetic therapy targeting facioscapulohumeral muscular dystrophy (FSHD). These milestones pave the way for global clinical trials of the therapy, which could offer new hope to patients suffering from this debilitating condition. | Medical, Research | Clinical Research, Clinical Trials, Drug Development | English | medical research | clinical-research clinical-trials drug-development | |
| Using HIPAA to Make Sure You Are Treatment Ready | Blog | What can you do to make sure your medical record contains the G71.02 code? You can use two rights under the Health Insurance Portability and Accountability Act (HIPAA): 1) the right to obtain access to your medical record and secure copies of that record and 2) the right to seek an amendment to your record | Living with FSHD, Medical | Disability Rights, Education, Insurance, Newly Diagnosed | English | living-with-fshd medical | disability-rights education insurance newly-diagnosed | ||
| The Care Connector: Find Resources Near You | Blog | The Care Connector is a searchable map, where you can set your search area and select what types of providers/resources you’d like to see. The information that pops up on the map comes from a variety of sources and will need to be updated regularly. | FSHD Society Information, Living with FSHD, Medical | Education, Find a Doctor | English | fshd-society-information living-with-fshd medical | education find-a-doctor | ||
| Springbok Analytics Leads MRI Innovations in Multi-Site Pediatric FSHD Clinical Study |
| Press Release | Springbok Analytics, a leader in AI-powered muscle analysis, today announced its role in MOVE Peds, the first large-scale clinical study focused on pediatric facioscapulohumeral muscular dystrophy (FSHD; NCT06847282). The study, led by top neuromuscular experts and funded by the NIH, aims to fill critical gaps in understanding how FSHD progresses in children and will set the foundation for future drug trials. | Research | Clinical Research, Clinical Trials, Drug Development, Press Releases | English | research | clinical-research clinical-trials drug-development press-releases | |
| Anesthesia in surgery for people with FSHD | Blog | Anesthesia in surgery for This webinar discusses anesthetic considerations for patients with FSHD, emphasizing that each anesthetic plan is tailored to the individual patient and procedure. The speaker is Bruna Castro de Oliveira, a board-certified anesthesiologist and director of the orthopedic anesthesia service at Mass General Hospital. Working with Dr. Bassem Elhassan, she has participated in many scapular surgery procedures for patients with FSHD. | Living with FSHD, Medical | Anesthesia, Breathing Problems, Lung Health, Medication, Pain, Patient Guidelines | English | living-with-fshd medical | anesthesia breathing-problems lung-health medication pain patient-guidelines | ||
| Rebounding Exercises | Youtube Video | Rebounding is a form of exercise that involves jumping on a mini trampoline. Cheryl Clulow shares her experiences with this form of exercise and its benefits for living with FSHD. | Living with FSHD, Wellness | Exercise, Heart Health | English | living-with-fshd wellness | exercise heart-health | ||
| FSHD Society Strengthens Leadership with Experts in Healthcare, Biotech, and Market Access | Blog | The FSHD Society, a leading nonprofit dedicated to advancing research and improving the lives of individuals with facioscapulohumeral muscular dystrophy (FSHD), proudly announces the appointment of four distinguished members to its Board of Directors. The newest members, Mel Hayes, Chris Mancill, William (Bill) Sarraille, and Jason Shi, bring a wealth of expertise spanning healthcare policy, biotechnology, corporate strategy, regulatory affairs, and machine learning. Their leadership will help guide the Society as it works to accelerate treatments and expand advocacy for the FSHD community. | FSHD Society Information | Press Releases | English | fshd-society-information | press-releases | ||
| MUSCLE FATIGUE IN MUSCULAR DYSTROPHIES | Link | Research study on the nature of fatigue in FSHD and other NMDs | Medical, Research | Fatigue | English | medical research | fatigue | ||
| ¿Qué tratamientos hay? | Link | Spanish-language podcast, “Treatments for FSHD?” | Research | Clinical Trials, Drug Development | Spanish | research | clinical-trials drug-development | ||
| The Fate of the Fulcrum Phase 3 Data | Blog | Following the closure of their FSHD program, Fulcrum has donated their entire dataset to the FSHD Society to help inform future research and clinical trials. | Research | Clinical Trials, Drug Development | English | research | clinical-trials drug-development | ||
| Nutrición | Podcast | Nutrition considerations for people with FSHD | Wellness | Diet and Nutrition | Spanish | wellness | diet-and-nutrition | ||
| European Neuromuscular Centre Conference on Pediatric FSHD | Blog | Ally Roets reflects on her time at the 2024 European Neuromuscular Conference. Her updates include information about: the FSHD Continuum for diagnoses; clinical management of Pediatric FSHD; and rethinking trial design for inclusion. | Living with FSHD, Medical, Research | Clinical Trials, Drug Development, Early Onset or Infatile, Mobility, Pediatric, Research Motivation, Young Adults | English | living-with-fshd medical research | clinical-trials drug-development early-onset-or-infatile mobility pediatric research-motivation young-adults | ||
| 2024 IRC Abstract Book | Brochure | Scientific abstracts from the 2024 International Research Congress on FSHD | Research | Basic Research, Clinical Research, Clinical Trials | English | research | basic-research clinical-research clinical-trials | ||
| Pediatric neuromuscular care | Slides | Dr. Stephen Chrzanowski at UMass Chan Medical School on how care is structured for pediatric patients | Medical | Pediatric | English | medical | pediatric | ||
| El estrés | Link | Podcast from FSHD Spain | Mental Health, Wellness | Spanish | mental-health wellness | ||||
| Dutch FSHD care guideline (English translation) | Brochure | Evidence-based care guide focusing on pain, fatigue, exercise, communication | Medical, Wellness | Communication, Exercise, Fatigue, Pain | English | medical wellness | communication exercise fatigue pain | ||
| Finding the care team you need | Document | Women on Wellness discussion notes on Medicare, Home health services, physiatrists, and keeping a sense of humor. | Living with FSHD, Medical, Wellness | Insurance, Physical Therapy | English | living-with-fshd medical wellness | insurance physical-therapy | ||
| Big pharmas show growing interest in FSHD | website | Large pharmaceutical companies are investing in small biotechs with FSHD therapeutic programs | Research | Drug Development | English | research | drug-development | ||
| Fighting for life insurance | website | Howard Chabner’s landmark case on discriminatory premium pricing based on his FSHD diagnosis | Living with FSHD | Disability Rights, Insurance | English | living-with-fshd | disability-rights insurance | ||
| The American with Disabilities Act | Slides | Talk by Marisa Spain on navigating the ADA in the real world | Living with FSHD | Advocacy, Disability Rights | English | living-with-fshd | advocacy disability-rights | ||
| Introduction to physical medicine and rehabilitation | Videos | Dr. Cristina Shea explains physiatry at the New England FSHD 360 | Medical | Occupational Therapy, Orthotics, Physical Therapy | English | medical | occupational-therapy orthotics physical-therapy | ||
| Getting treatments to young patients | Link | The MOVE Pediatric study is essential for clinical trials for children | Research | Pediatric | English | research | pediatric | ||
| Why I exercise | Link | Frank Hanley of Feeling Fit with FSHD on the many benefits of exercise | Mental Health, Wellness | Exercise | English | mental-health wellness | exercise | ||
| High-intensity exercise training in FSHD | website | High-intensity training is safe and improves fitness | Medical, Wellness | Exercise, Heart Health | English | medical wellness | exercise heart-health | ||
| Access to healthcare for people with disabilities | Link | Talk by Dr. Elizabeth Pendo, Univ. of Washington | Medical, Wellness | Disability Rights | English | medical wellness | disability-rights | ||
| Insurance coverage for costly rare-disease treatments | Brochure | Guidance from Little Hercules Fdn | Medical | Advocacy, Drug Development, Insurance | English | medical | advocacy drug-development insurance | ||
| FSHD and pregnancy | Brochure | From Dr. Emma Ciafaloni, Univ. of Rochester | Medical | Reproductive Health, Women | English | medical | reproductive-health women | ||
| Adjusting to a new environment | Brochure | Tips for finding new care providers, adapting a new home, making new friends | Wellness | Adaptations, Social Support | English | wellness | adaptations social-support | ||
| Getting treatments to young patients | website | About the MOVE Peds study | Research | Clinical Research, Clinical Trials, Pediatric | English | research | clinical-research clinical-trials pediatric | ||
| Products and devices for dental care | Brochure | Dentists with FSHD patients share tips for dental care | Medical | Facial Weakness | English | medical | facial-weakness | ||
| Changemaker: Archer Sverdrup | website | Archer co-founded Everything Early Onset | Living with FSHD, Wellness | Early Onset or Infatile, Social Support | English | living-with-fshd wellness | early-onset-or-infatile social-support | ||
| Working out with a personal trainer | Video | A personal trainer helps improve strength and function | Living with FSHD, Wellness | Exercise | English | living-with-fshd wellness | exercise | ||
| The Advocate, 2024 Issue 3 | Clinical Trial Readiness, notable FSHers, Society updates. | Living with FSHD | Advocacy, Care Partner, Children, Clinical Research, Clinical Trials, Early Onset or Infatile, Families, Fundraising, Research Motivation, Walk and Roll, Women, Young Adults | English | living-with-fshd | advocacy care-partner children clinical-research clinical-trials early-onset-or-infatile families fundraising research-motivation walk-and-roll women young-adults | |||
| FEMA's emergency preparedness for older adults | Brochure | How to be prepared for emergencies and natural disasters if you have impaired mobility. | Living with FSHD | Disability Rights, Wheelchairs | English | living-with-fshd | disability-rights wheelchairs | ||
| Aging in place – Tips for planning ahead | website | Tips and resources for adapting your home for future disability | Living with FSHD | Adaptations, Home Renovation | English | living-with-fshd | adaptations home-renovation | ||
| It's alive! It's alive! | website | Robotic spoon enables independence in feeding | Living with FSHD, Wellness | Diet and Nutrition, Forearm and Hand Weakness | English | living-with-fshd wellness | diet-and-nutrition forearm-and-hand-weakness | ||
| Muscle loss with Ozempic® and similar drugs | website | Risk of muscle loss from taking GLP-1 agonists | Medical, Wellness | Diet and Nutrition, Medication | English | medical wellness | diet-and-nutrition medication | ||
| FSHD Advocate 2024, Issue 3 | This issue of the FSHD Advocate features innovations in FSHD research, treatments, and care. | FSHD Society Information, Living with FSHD, Medical, Research, Wellness | Adaptations, Alternative Therapies, Disability Rights, Drug Development, Insurance, Mobility | fshd-society-information living-with-fshd medical research wellness | adaptations alternative-therapies disability-rights drug-development insurance mobility | ||||
| The FSHD Navigator | Blog Post | The FSHD Navigator helps families with FSHD find what they need to live their best lives. | Living with FSHD, Medical, Research, Wellness | Newly Diagnosed, Website | living-with-fshd medical research wellness | newly-diagnosed website | |||
| The very model of a modern epigenetic disease | website | Explains epigenetics and its role in FSHD1 and 2 | Research | Genetic Counseling, Genetic Testing | English | research | genetic-counseling genetic-testing | ||
| Ten things I wish someone had told me… | website | Advice on planning for the challenges of FSHD | Living with FSHD, Mental Health, Wellness | Advocacy, Early Onset or Infatile, Mobility, Newly Diagnosed, Pain | English | living-with-fshd mental-health wellness | advocacy early-onset-or-infatile mobility newly-diagnosed pain | ||
| Braces for shoulder stabilization | Website | A patient explains how he uses shoulder braces to help stabilize his scapula. | Medical | Orthotics, Shoulder Weakness | English | medical | orthotics shoulder-weakness | ||
| Emergency considerations for FSHD patients | Website | Reviewed by Dr. Joshua Benditt, a guide for EMTs and ER doctors on how to correctly manage a person with FSHD who is in respiratory distress. | Medical | Breathing Problems | English | medical | breathing-problems | ||
| Medic alert card (2024 version0 | Link | Downloadable PDF wallet card to print on cardstock | Living with FSHD, Medical | Breathing Problems | English | living-with-fshd medical | breathing-problems | ||
| Staying Active While at Home | Website | Julie Hershberg, DPT, demonstrates exercises to do at home | Medical, Wellness | Exercise, Physical Therapy | English | medical wellness | exercise physical-therapy | ||
| Nerve mobility and pain, with Arielle Levy | Video | Approaches to relieving pain caused by irritated nerves.
| Medical, Wellness | Exercise, Pain, Videos | English | medical wellness | exercise pain videos | ||
| ACT to improve quality of life | Website | Dr. Kent Drescher on acceptance & commitment therapy | Mental Health, Wellness | Anxiety, Depression | English | mental-health wellness | anxiety depression | ||
| Mental health challenges for children and teens with FSHD |
| Video | Dr. David Younger’s personal journey and insights on coming to terms with FSHD | Mental Health, Wellness | Pediatric, Teens, Young Adults | English | mental-health wellness | pediatric teens young-adults | |
| Gene therapy for FSHD and what families can do to help | Video | Scott Harper on progress toward gene therapy | Research | Clinical Trials, Drug Development, Pediatric | English | research | clinical-trials drug-development pediatric | ||
| Pediatric FSHD natural history studies | Video | Current research in the US and Australia | Research | Clinical Research, Pediatric | English | research | clinical-research pediatric | ||
| Speech and swallowing issues in children with FSHD | Video | How to recognize and manage swallowing and speech problems | Living with FSHD, Medical | Communication, Facial Weakness, Pediatric | English | living-with-fshd medical | communication facial-weakness pediatric | ||
| Sharon Terry on genetic testing of children with FSHD | Video | The case for early genetic diagnosis | Medical, Research | Clinical Research, Genetic Testing, Pediatric | English | medical research | clinical-research genetic-testing pediatric | ||
| Dr. Jeffrey Statland on research gaps in pediatric FSHD | Video | The road to including children in FSHD clinical trials | Research | Clinical Research, Clinical Trials, Pediatric, Teens | English | research | clinical-research clinical-trials pediatric teens | ||
| Accessible Driver’s License and Modified Vehicles | Video | For people in wheelchairs who want to be able to drive themselves | Living with FSHD | Teens, Wheelchairs, Young Adults | English | living-with-fshd | teens wheelchairs young-adults | ||
| FSHD University: Family Communication with Dr. Jennifer Egert, Patients, and Family Members | Video | Webinar with Dr. Jennifer Egert, Patients, and Family Members | Living with FSHD, Wellness | Anxiety, Depression, Newly Diagnosed | English | living-with-fshd wellness | anxiety depression newly-diagnosed | ||
| Living well with FSHD and thriving in difficult times | Video | Webinar by Dr. Ora Prilleltensky, psychologist with FSHD | Mental Health, Wellness | Anxiety, Counseling, Depression | English | mental-health wellness | anxiety counseling depression | ||
| Scapular surgery for FSH muscular dystrophy | Video | Webinar by Anthony Romeo, expert on scapular surgery | Medical | Shoulder Weakness | English | medical | shoulder-weakness | ||
| Q and A about FSH muscular dystrophy with Kathryn Wagner, MD PhD | Video | Useful overview by top expert | Medical | Newly Diagnosed | English | medical | newly-diagnosed | ||
| The History of FSH muscular dystrophy in a large Utah kindred | Video | Video | Fascinating history of largest kindred of FSHD | Research | Genetic Counseling | research | genetic-counseling | ||
| Orthotics for Knee Hyperextension and Spine issues in FSHD | Videos | Webinar by Bob Meier, certified orthotist | Medical | Hip and Upper Leg Weakness, Lower Leg and Ankle Weakness, Orthotics | English | medical | hip-and-upper-leg-weakness lower-leg-and-ankle-weakness orthotics | ||
| Early onset FSHD with Tina Duong | Video | Findings from natural history study of early-onset FSHD | Medical, Research | Pediatric | English | medical research | pediatric | ||
| Managing difficult emotions and experiences, with Dr. David Younger | Video | A psychologist with FSHD on the power of mindfulness meditation | Living with FSHD, Mental Health, Wellness | Anxiety, Depression, Lonliness | English | living-with-fshd mental-health wellness | anxiety depression lonliness | ||
| The Job Talk with Lynn Stevens | Video | Lynn shares her journey with FSHD and expertise in job placement for people with disabilities | Living with FSHD | Ableism, Disability Rights, Young Adults | English | living-with-fshd | ableism disability-rights young-adults | ||
| Clinical Trials 101 with Dr Tahseen Mozaffar | Video | Webinar on the basics of how clinical trials work | Research | Clinical Trials, Drug Development | English | research | clinical-trials drug-development | ||
| Dynamic sitting - exercising in a seated position | Video | By Nikia Stinson, DPT, from Kennedy Krieger Institute | Living with FSHD, Medical, Wellness | Exercise, Hip and Upper Leg Weakness, Lower Leg and Ankle Weakness | English | living-with-fshd medical wellness | exercise hip-and-upper-leg-weakness lower-leg-and-ankle-weakness | ||
| FSHD Sleep and pain study by Heloise Hoffmann | Video | Results of survey study on sleep quality and sleep disorders | Living with FSHD, Medical, Mental Health, Wellness | Pain, Sleep Problems | English | living-with-fshd medical mental-health wellness | pain sleep-problems | ||
| The Mattering Effect: How Feeling Valued and Adding Value Shape our Lives | Video |
| Living with FSHD | Depression, Lonliness, Self Harm | English | living-with-fshd | depression lonliness self-harm | ||
| Reproductive genetic counseling and pregnancy | Video | Genetic testing of embryo, FSHD impact on pregnant women | Medical | Genetic Counseling, Genetic Testing, Reproductive Health, Women | English | medical | genetic-counseling genetic-testing reproductive-health women | ||
| Nutrition and FSHD with Matt Beke | Video | Nutrition guidance from U Florida nutritionist | Living with FSHD, Wellness | Diet and Nutrition | English | living-with-fshd wellness | diet-and-nutrition | ||
| Shoulder dyskinesia in FSH muscular dystrophy | Video | Fixing maladaptive movements to compensate for shoulder weakness | Living with FSHD, Medical | Exercise, Pain, Shoulder Weakness | English | living-with-fshd medical | exercise pain shoulder-weakness | ||
| Managing pain in individuals with FSHD | Video | Managing chronic pain takes a multidisciplinary team | Living with FSHD, Medical | Anxiety, Depression, Medication, Mindfulness, Pain | English | living-with-fshd medical | anxiety depression medication mindfulness pain | ||
| Changing Our Mindset About Assistive Technologies | Video | Emma W see technology as tools for living her best life | Living with FSHD | Orthotics, Wheelchairs | English | living-with-fshd | orthotics wheelchairs | ||
| Resilience and FSHD | Video | Kent Drescher, PhD, on psychotherapy that has proven benefit for FSHD | Living with FSHD, Mental Health, Wellness | Anxiety, Counseling, Depression | English | living-with-fshd mental-health wellness | anxiety counseling depression | ||
| Nutritional and exercise interventions for FSHD | Video | Dr. Mark Tarnopolsky presents his research and treatment ideas | Living with FSHD, Medical | Diet and Nutrition, Exercise | English | living-with-fshd medical | diet-and-nutrition exercise | ||
| Bowel and Urinary issues in FSHD | Video | Survey shows GI and urinary issues are common and merit further research | Medical | Gastrointestinal Problems, Urinary Problems | English | medical | gastrointestinal-problems urinary-problems | ||
| Epic Bio’s FSHD Program | Video | The first gene therapy for FSHD to reach a clinical trial | Research | Clinical Trials, Drug Development | English | research | clinical-trials drug-development | ||
| Dr. Bakri Elsheikh: What Every Newly Diagnosed Person Should Know | Video | FSHD 101 for newly diagnosed people | Medical | Newly Diagnosed | English | medical | newly-diagnosed | ||
| Physical Therapy for Shoulder Issues in Kids with Maaike Pelsma | Video | Video | Dutch expert discusses PT for children with FSHD | Medical | Children, Physical Therapy, Shoulder Weakness | medical | children physical-therapy shoulder-weakness | ||
| FSHD University Annual Drug Update | Video |
| Research | Clinical Trials, Drug Development | English | research | clinical-trials drug-development | ||
| Treating FSHD: A Broader View with Nicol Voermans, MD PhD, and Nathaniël Rasing, MD | Video | Treat all aspects of FSHD to optimize your well-being | Medical, Wellness | Breathing Problems, Diet and Nutrition, Drug Development, Exercise, Fatigue, Pain, Social Support | English | medical wellness | breathing-problems diet-and-nutrition drug-development exercise fatigue pain social-support | ||
| Breathing with FSHD | Video | Excellent overview on breathing issues for people with neuromuscular disease | Medical | Breathing Problems, Sleep Problems | English | medical | breathing-problems sleep-problems | ||
| Exercise for hip flexors Part 2 | Video | Qi Gong-based exercises for hip flexors | Living with FSHD | Exercise, Hip and Upper Leg Weakness | English | living-with-fshd | exercise hip-and-upper-leg-weakness | ||
| Pain management in FSHD | Kathy Mathews, MD, and colleagues at Univ of Iowa explain the pain management requires multiple approaches working together | Living with FSHD, Medical | Pain | English | living-with-fshd medical | pain | |||
| A delicate matter for female travelers with FSHD | Website | Women on Wellness group on managing challenges with toilets, urinary and bowel accidents | Living with FSHD | Adaptations, Gastrointestinal Problems, Urinary Problems | English | living-with-fshd | adaptations gastrointestinal-problems urinary-problems | ||
| About ankle-foot orthoses (AFOs) | Website | Patient’s overview of different types of ankle-foot orthoses (AFO) | Living with FSHD, Media Type | Fall Prevention, Lower Leg and Ankle Weakness, Orthotics | English | living-with-fshd media-type | fall-prevention lower-leg-and-ankle-weakness orthotics | ||
| Design to thrive | Website | Jane Nemke describes accessible design modifications to her home | Living with FSHD | Adaptations | English | living-with-fshd | adaptations | ||
| Changing mindset about assistive technologies | Website | Assistive technologies enable us to live our best lives | Living with FSHD | Adaptations, Scooters, Wheelchairs | English | living-with-fshd | adaptations scooters wheelchairs | ||
| My Superpower – Why I volunteer for clinical trials | Website | A patient’s account of being in a clinical trial and how to prepare | Research | Clinical Trials | English | research | clinical-trials | ||
| Transitioning to Adulthood | Video |
| Living with FSHD | Teens, Young Adults | English | living-with-fshd | teens young-adults | ||
| Abdominal and breathing exercises for FSHD | Website | Frank Hanley’s Qi Gong exercises for breathing and core strength | Living with FSHD | Breathing Problems, Core Weakness, Exercise | English | living-with-fshd | breathing-problems core-weakness exercise | ||
| International research round-up | Website | Summary of research from 2022 International Research Congress | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | ||
| Bowel and urinary issues in FSHD | Website | University of Iowa survey study finds higher prevalance of bowel and urinary issues | Medical | Gastrointestinal Problems, Urinary Problems | English | medical | gastrointestinal-problems urinary-problems | ||
| Feeling Fit: Exercises for the neck and shoulders | Frank Hanley shares Qi Gong-base exercises for neck and shoulders. | Living with FSHD | Exercise | English | living-with-fshd | exercise | |||
| Feeling Fit with low-impact seated exercises | Website | Video and a music playlist for exercising | Living with FSHD | Exercise | English | living-with-fshd | exercise | ||
| Stay warm and safe | Website | Why cold temperatures are hard. Tips for keeping warm. | Living with FSHD | Adaptations | English | living-with-fshd | adaptations | ||
| (Cautious) optimism in FSHD drug development | Website | Patients play a critical role | Research | Drug Development | English | research | drug-development | ||
| Feeling Fit with Lonwabo Nene | Website | Exercises that have helped this FSHD patient | Wellness | Exercise | English | wellness | exercise | ||
| How postural changes lead to pain | Website | Physiotherapist Ulrike Uta explains how muscle weakness from FSHD can cause people to compensate by overworking other muscles | Living with FSHD, Medical, Wellness | Core Weakness, Exercise, Fatigue, Pain | English | living-with-fshd medical wellness | core-weakness exercise fatigue pain | ||
| About early-onset FSHD | Website | Dr. Tina Duong reviews natural history data on early-onset FSHD | Medical, Research | Clinical Research, Pediatric | English | medical research | clinical-research pediatric | ||
| Feeling Fit: Exercising your hands and arms | Website | Qi Gong teacher Frank Hanley leads exercises for hands and arms | Living with FSHD | Forearm and Hand Weakness | English | living-with-fshd | forearm-and-hand-weakness | ||
| Your practical guide to clinical trials | Website | Clinical trial process and terminology explained | Research | Clinical Trials | English | research | clinical-trials | ||
| What to do in a crisis | Website | Resources for coping with depression, anxiety, self harm, suicidal thoughts | Mental Health, Wellness | Anxiety, Depression, Self Harm | English | mental-health wellness | anxiety depression self-harm | ||
| New frontiers in muscle regeneration for FSHD | Website | More companies are looking at strategies to regrow muscles | Research | Clinical Research, Drug Development | English | research | clinical-research drug-development | ||
| Raising our voice to raise our seats! | Website | Elevating wheelchair seats are essential for safety and daily tasks. Medicare will now cover the cost | Living with FSHD, Medical, Wellness | Insurance, Wheelchairs | English | living-with-fshd medical wellness | insurance wheelchairs | ||
| Managing Fatigue | Website | Tips and tricks from patients on managing and reducing fatigue | Wellness | Fatigue | English | wellness | fatigue | ||
| Adventures with a robotic leg brace | Website | The C-brace is helping a patient to walk again. | Living with FSHD, Medical | Hip and Upper Leg Weakness, Orthotics | English | living-with-fshd medical | hip-and-upper-leg-weakness orthotics | ||
| New global coalition to speed delivery of therapies for FSHD | Website | Project Mercury aims to speed clinical trials and advocate for access to new treatments | FSHD Society Information | Clinical Research, Press Releases | English | fshd-society-information | clinical-research press-releases | ||
| Walkers and Wheelchairs 101 | Website | Different types of wheelchairs and how to choose the right device | Living with FSHD, Medical | Mobility, Wheelchairs | English | living-with-fshd medical | mobility wheelchairs | ||
| Falling backwards and what to do about it | Website | Tips and tricks to prevent falling backward | Living with FSHD, Medical | Fall Prevention, Hip and Upper Leg Weakness, Lower Leg and Ankle Weakness | English | living-with-fshd medical | fall-prevention hip-and-upper-leg-weakness lower-leg-and-ankle-weakness | ||
| Making strides toward stem cell therapies | Website | Stem cell-based treatments for muscular dystrophy are advancing in the lab of Rita Perligeiro at the University of Minnesota | Research | Basic Research, Drug Development | English | research | basic-research drug-development | ||
| Eye Care Tips and Tricks for FSHD | Website | Tips & tricks for keeping eyes comfortable and healthy | Medical | Dry Eyes | English | medical | dry-eyes | ||
| An ounce of prevention… | Website | Falls are a leading cause of serious injury and death. Here are tips on preventing falls. | Living with FSHD, Medical | Fall Prevention, Hip and Upper Leg Weakness, Lower Leg and Ankle Weakness | English | living-with-fshd medical | fall-prevention hip-and-upper-leg-weakness lower-leg-and-ankle-weakness | ||
| Fall vaccine guide | Website | A clear and concise guide to recommended vaccines (2023). | Medical | Breathing Problems, Lung Health, Medication | English | medical | breathing-problems lung-health medication | ||
| Holistic approaches to fitness and wellbeing | Website | Rita Lynn follows a holistic approach to fitness and well-being that integrates psychology, diet, meditation, and breathing. | Wellness | Diet and Nutrition, Exercise, Meditation | English | wellness | diet-and-nutrition exercise meditation | ||
| When I finally discovered the benefits of support groups | Website | One man’s journey to discovering the benefits of connecting with others with FSHD. | Mental Health, Wellness | Social Support | English | mental-health wellness | social-support | ||
| Orphan drug designation for Epic Bio’s FSHD candidate | Website | What an orphan drug designation for Epic Bio’s drug means. | Research | Drug Development | English | research | drug-development | ||
| A holistic approach | Website | The FSHD Society’s goal is better lives for everyone with FSHD. Basic and medical research, trial readiness, well-being for individuals, community, it’s all important. | FSHD Society Information, Living with FSHD, Medical, Mental Health, Research | Advocacy, Basic Research, Clinical Research, Clinical Trials | English | fshd-society-information living-with-fshd medical mental-health research | advocacy basic-research clinical-research clinical-trials | ||
| 2023 International Research Congress summary | Website | Highlights from the 2023 IRC meeting. | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | ||
| Kitchen Confidential | Website | Tips and tricks to make kitchen and cooking tasks easier. | Living with FSHD, Wellness | Diet and Nutrition, Home Renovation | English | living-with-fshd wellness | diet-and-nutrition home-renovation | ||
| Treatments for FSHD: A broader view | Website | Dr. Nicol Voermans’ holistic approach to patients’ well-being. | Medical, Wellness | Alternative Therapies, Patient Guidelines | English | medical wellness | alternative-therapies patient-guidelines | ||
| Clinical care vs. clinical research | Website | Explains the difference between research and medical care. | Medical, Research | Clinical Research, Clinical Trials | English | medical research | clinical-research clinical-trials | ||
| Engineering new muscles | Website | Engineering a scaffold allowing muscle stem cells to rebuild injured muscles. | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | ||
| Shaking Qigong to relax your body | Website | Shaking Qi Gong opens up our joints or energy gates and meridians allowing the free flow of Qi (energy) in our body. | Wellness | Exercise | English | wellness | exercise | ||
| The children of FSHD – they exist, too | Website | Trial readiness for pediatric and early-onset FSHD. | Research | Children, Drug Development, Early Onset or Infatile | English | research | children drug-development early-onset-or-infatile | ||
| FSHD advocate in film about Apple Personal Voice | Website | Medical | Communication, Videos | English | medical | communication videos | |||
| Women’s health with Dr. Loralei Thornberg | Website | Medical | Videos, Women | English | medical | videos women | |||
| Vita Therapeutics’ cell-based therapy update | Blog | News and video updates about the company's strategy to create stems cells which evade the immune system. | Research | Drug Development | English | research | drug-development | ||
| Statins (cholesterol-lowering drugs) and muscular dystrophy | Website | A very helpful article on the risks and benefits of taking statins (cholesterol-lowering drugs). | Medical | Heart Health, Medication | English | medical | heart-health medication | ||
| Every person’s effort takes us closer to the tipping point | Website | From our 2024 Volunteer Leadership Summit, chapter and Walk & Roll leaders talk about the transformative impact of working together. | Living with FSHD | Advocacy, Social Support | English | living-with-fshd | advocacy social-support | ||
| FSHD Representation in Film Fest Favorite ‘Good Bad Things’ | Website | A film by a screenwriter and actor with FSHD is taking top prizes on the film festival circuit. | Living with FSHD | Ableism | English | living-with-fshd | ableism | ||
| Understanding your FSHD | Link | Lonwabo Nene says being able to describe accurately how FSHD affects your body is key to taking charge of your health. | Wellness | Exercise | English | wellness | exercise | ||
| Yoga adapted for FSHD | Brochure | Feeling Fit with FSHD handout by Rita Lynn on adaptive yoga. | Wellness | Exercise, Meditation | English | wellness | exercise meditation | ||
| FSHD Advocate 2024, Issue 1 | Taking acton toward well-being. Articles about body-awareness, finding social connection, gaining insight through BetterHealth FSHD, getting out into nature, embracing assistive technology, Epic Bio’s FSHD therapy. | FSHD Society Information, Living with FSHD, Wellness | Advocacy, Clinical Research, Magazine | English | fshd-society-information living-with-fshd wellness | advocacy clinical-research magazine | |||
| FSHD Advocate 2023 Issue 3 | Link | This issue of FSHD Advocate features Better Life FSHD and Project Mercury updates; broader views on treatment options; FSHD Navigator; clinical care vs. clinical research; engineering new muscles; children and youth with FSHD; and the FACT Alliance. | FSHD Society Information, Living with FSHD | Ableism, Adaptations | English | fshd-society-information living-with-fshd | ableism adaptations | ||
| FSHD Advocate 2023 Issue 2 | Link | This issue of FSHD Advocate features Project Mercury. Additional articles about: 2023 International Research Congress; World FSHD Alliance annual summit; Industry consortium workshop; patient access to treatments (Josie Godfrey); stem cell therapeis from Rita Perlingeiro lab; TrueCost of FSHD study; Red Scooter Diaries documentary; essay by Nina Wise; ad for Walk & Roll to Cure FSHD; Lolo Spencer podcast; Chip Wilson podcast; Sam and Kate "We Exist Too" video; fitness with Mitch Wade. | FSHD Society Information, Living with FSHD, Medical, Research | Advocacy, Basic Research, Clinical Research, Clinical Trials, Stories | English | fshd-society-information living-with-fshd medical research | advocacy basic-research clinical-research clinical-trials stories | ||
| FSHD Advocate 2023 Issue 1 | Link | FSHD Society Information, Living with FSHD, Medical, Research | Advocacy, Clinical Research, Clinical Trials, Stories | English | fshd-society-information living-with-fshd medical research | advocacy clinical-research clinical-trials stories | |||
| Understanding and Navigating Medicare | Excellent guide from Global Genes for people with long-term disability on how to navigate Medicare coverage. | Living with FSHD, Medical | Disability Benefits, Insurance | English | living-with-fshd medical | disability-benefits insurance | |||
| Physical therapy for shoulder dyskinesia in FSHD | Slides from 2022 FSHD Connect plenary talk by Jos IJspeert. | Medical | Exercise, Pain, Physical Therapy, Shoulder Weakness | English | medical | exercise pain physical-therapy shoulder-weakness | |||
| FSHD Advocate 2022 Issue 3 | Link | Preparing for clinical trials in FSHD. | FSHD Society Information, Living with FSHD, Medical, Research | Clinical Trials | English | fshd-society-information living-with-fshd medical research | clinical-trials | ||
| Apoyo psicosocial para familias con hijos recién diagnosticados | Brochure | Esta guía psicosocial para familias con hijos/as recién diagnosticados de Enfermedad Neuromuscular (ENM) | Mental Health, Wellness | Families, Newly Diagnosed | Spanish | mental-health wellness | families newly-diagnosed | ||
| Fisioterapia en la FSHD | Brochure | Folleto de la fundación holandesa FSHD sobre fisioterapia | Living with FSHD, Medical | Exercise, Physical Therapy | Spanish | living-with-fshd medical | exercise physical-therapy | ||
| Terapia física | Brochure | Folleto de la FSHD Society sobre fisioterapia | Living with FSHD, Medical | Physical Therapy | Spanish | living-with-fshd medical | physical-therapy | ||
| El dolor en la FSHD | website | Damos a conocer un estudio que analiza el dolor en FSHD | Living with FSHD, Medical | Pain | Spanish | living-with-fshd medical | pain | ||
| Manifestaciones extramusculares en FSHD | website | FSHD manifestarse en otros órganos del cuerpo | Medical | Bone Health, Breathing Problems, Coat's Disease, Fatigue, Hearing Loss, Heart Health, Pain, Sleep Problems | Spanish | medical | bone-health breathing-problems coats-disease fatigue hearing-loss heart-health pain sleep-problems | ||
| Anticipación genética en FSHD | website | Una revisión de la literatura sobre la anticipación genética en FSHD. | Medical, Research | Genetic Counseling, Genetic Testing | Spanish | medical research | genetic-counseling genetic-testing | ||
| Tratamiento génico en FSHD | website | Tratamiento génico en FSHD | Research | Drug Development | Spanish | research | drug-development | ||
| Estimulación eléctrica muscular | website | Información básica de FSHD España | Medical | Physical Therapy | Spanish | medical | physical-therapy | ||
| FSHD Advocate 2022 Issue 2 | Link | Focus on 2022 international research congress, FSHD Connect | Research | Clinical Research, Clinical Trials | English | research | clinical-research clinical-trials | ||
| FSHD Advocate 2022 Issue 1 | Link | Igniting the fire within: What motivates people to get involved | Clinical Trials, Research Motivation | English | clinical-trials research-motivation | ||||
| FSHD Advocate 2021 Issue 3 | Link | How the Society has an outsized impact on research and trial readiness | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | ||
| FSHD Advocate 2021 Issue 2 | LINK | Living with FSHD, Mental Health | Clinical Research, Early Onset or Infatile, Mobility, Wheelchairs | English | living-with-fshd mental-health | clinical-research early-onset-or-infatile mobility wheelchairs | |||
| Notes of spinal and scapular surgery | Surgeons Robert K. Lark and E.W. Hubbard write on when surgery might be indicated for spinal deformities in individuals with FSHD. | Medical | Core Weakness, Spine Problems | English | medical | core-weakness spine-problems | |||
| FSHD Advocate 2021 Issue 1 | Activate! Research, community, and self | FSHD Society Information, Living with FSHD, Mental Health | Advocacy | English | fshd-society-information living-with-fshd mental-health | advocacy | |||
| FSHD Advocate 2020 Issue 3 | LINK | Keeping our focus on treatments and a cure | Living with FSHD, Mental Health, Research | Clinical Trials, Orthotics | English | living-with-fshd mental-health research | clinical-trials orthotics | ||
| Voice of the Patient Report | Book | Landmark report on FSHD’s disease burden and unmet medical need, submitted to the FDA in 2020. | Living with FSHD, Research | Advocacy, Clinical Research, Clinical Trials | English | living-with-fshd research | advocacy clinical-research clinical-trials | ||
| Industry Collaborative for Therapy Development in FSHD | White paper of 2019 Industry Collaborative meeting summarizes gaps in trial readiness for biomarkers, imaging, trial outcomes, and natural history. | FSHD Society Information, Research | Clinical Trials, Drug Development | English | fshd-society-information research | clinical-trials drug-development | |||
| 100 Questions and Answers About Muscular Dystrophy (First Edition, 2020) | Link | By Kathryn R. Wagner, MD, PhD. This book offers essential and practical guidance. This unique book provides both doctor and patient perspectives and offers answers to the most asked questions by patients and their loved ones. | Medical, Mental Health | Bone Health, Books, Breathing Problems, Diet and Nutrition, Drug Development, Exercise, Heart Health, Orthotics, Shoulder Weakness, Social Support, Wheelchairs | English | medical mental-health | bone-health books breathing-problems diet-and-nutrition drug-development exercise heart-health orthotics shoulder-weakness social-support wheelchairs | ||
| FSHD Advocate 2020 Issue 2 | Link | How we quickly adapted to the COVID pandemic lockdown | Living with FSHD, Mental Health | Advocacy, care, Social Support | English | living-with-fshd mental-health | advocacy care social-support | ||
| FSHD Advocate 2020 Issue 1 | Link | Everything you ever wanted to know about the path to clinical trials | Medical, Research | Clinical Research, Clinical Trials | English | medical research | clinical-research clinical-trials | ||
| FSHD Advocate 2019 Issue 3 | Link | How advocacy transforms lives | Living with FSHD | Advocacy | English | living-with-fshd | advocacy | ||
| FSHD Connect 2014 | Link | YouTube | Video from the FSH Society’s 2014 patient education conference. Facial surgery, nutrition, exercise were among the topics. | Living with FSHD, Medical, Research | Diet and Nutrition, Facial Weakness | English | living-with-fshd medical research | diet-and-nutrition facial-weakness | ||
| FSHD Society Research Seminars | Link | YouTube | Our YouTube playlist of talks about FSHD research. | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | ||
| FSH Society webinar with Dr Rabi Tawil | Link | Talk by leading FSHD neurologist on best care practices. | Medical | Patient Guidelines | English | medical | patient-guidelines | ||
| Facial surgery methods for Facioscapulohumeral Muscular Dystrophy | Link | FSH Society Baltimore patient meeting, February 16, 2013. Dr. Kofi Boahene of the Johns Hopkins Hospital discussed surgical techniques he has developed to address facial muscle weakness in FSHD patients. Apologies for missing the first few minutes of his talk and for suboptimal audio. | Medical | Facial Weakness | English | medical | facial-weakness | ||
| Dr. Anthony Romeo describes scapularthoracic fusion surgery for FSHD | Link | In this video, Dr. Romeo introduces facioscapulohumeral muscular dystrophy (FHSD) and discusses the surgical procedure of scapulothoracic fusion. | Medical | Back Weakness, Scapular Winging, Shoulder Weakness | English | medical | back-weakness scapular-winging shoulder-weakness | ||
| Introduction to yoga for people with FSHD | Link | Instructor Alexa Schang, PT DPT NCS, RYT-200 guides participants through yoga poses which can strengthen and stretch muscles affected by FSHD. | Living with FSHD, Wellness | Exercise, Videos | English | living-with-fshd wellness | exercise videos | ||
| FSH Society Michigan Meeting | Link | Exercises to wake up your muscles | Living with FSHD, Wellness | Exercise | English | living-with-fshd wellness | exercise | ||
| Muscle Activation Exercises with Lynnette Rasmussen FSH Society | Link | Exercises tailored for an FSHD patient | Living with FSHD | Exercise | English | living-with-fshd | exercise | ||
| Dealing with Physical Decline from Muscular Dystrophy, by Don Nemke | Detailed ideas for home renovation and accessiblity by Don Nemke | Living with FSHD | Adaptations, Home Renovation | English | living-with-fshd | adaptations home-renovation | |||
| A Guide for Schools | To give to your child’s schools. How to advocate for your child | Living with FSHD, Wellness | Adaptations, Occupational Therapy, Pediatric | English | living-with-fshd wellness | adaptations occupational-therapy pediatric | |||
| FSHD and Social Support: A Guide for Friends and Family | How to communicate effectively about what you need | Living with FSHD, Mental Health, Wellness | Social Support | English | living-with-fshd mental-health wellness | social-support | |||
| You Are Not Alone. A Guide for the Newly Diagnosed | Advice from people reflecting on their feelings and experiences when they were first diagnosed. | Living with FSHD, Mental Health | Care Partner, Newly Diagnosed | English | living-with-fshd mental-health | care-partner newly-diagnosed | |||
| 171st ENMC International Workshop- Standards of care and management of FSHD | 2010 standards of care from the European Neuromuscular Center | Medical | Patient Guidelines | English | medical | patient-guidelines | |||
| Evidence-based FSHD care guideline AAN tools and materials | Link | Medical | Patient Guidelines | English | medical | patient-guidelines | |||
| Evidence-based FSHD care guideline – Summary for patients & families | Link | Patient-friendly summary of 2015 standard of care for FSHD | Medical | Patient Guidelines | English | medical | patient-guidelines | ||
| Evidence-based FSHD care guideline – Summary for clinicians | Link | Summary of 2015 care guideline to share with your doctor | Medical | Patient Guidelines | English | medical | patient-guidelines | ||
| Medical Equipment: Access Solutions and Respiratory Therapy by Howard Chabner | Guidance from lawyer and patient advocate Howard Chabner | Medical | Breathing Problems, Insurance | English | medical | breathing-problems insurance | |||
| Early-onset (infantile) FSHD Fact Sheet | One page flyer with facts about early-onset FSHD | Medical | Early Onset or Infatile | English | medical | early-onset-or-infatile | |||
| FSHD Fact Sheet | One page flyer you can print out to give to others. Handy for fundraisers. | Living with FSHD | Advocacy, Education, Newly Diagnosed | English | living-with-fshd | advocacy education newly-diagnosed | |||
| An Overview of Anesthetic Concerns by Raymond Huml | Review of medical literature on anesthesia for neuromuscular patients | Medical | Anesthesia | English | medical | anesthesia | |||
| Guidelines for Physical Therapists Treating Clients with Neuromuscular Disorders | Medicare and maintenance physical therapy. Know your rights. | Medical | Exercise, Insurance, Physical Therapy | English | medical | exercise insurance physical-therapy | |||
| Letter Requesting Insurance Coverage for Genetic Testing (Word Doc Templates) | DOC | DOCX | If insurance denies your genetic testing claim, here’s how to contest it | Medical | Genetic Testing, Insurance | English | medical | genetic-testing insurance | ||
| Evidence-based FSHD Care Guideline + Online Resources | Pamphlet summarizing 2015 care guideline for FSHD | Living with FSHD, Medical | Patient Guidelines | English | living-with-fshd medical | patient-guidelines | |||
| Resources for FSHD patients & families | Living with FSHD, Medical | Care Partner, Education, Research Motivation, Stories | English | living-with-fshd medical | care-partner education research-motivation stories | ||||
| Physical Therapy for FSHD brochure (in Chinese) | Living with FSHD | Education, Physical Therapy | Chinese | living-with-fshd | education physical-therapy | ||||
| About FSHD (in Spanish; in Chinese) | About FSHD (in Spanish; in Chinese) | Downloadable overview of FSHD for people living with the condition | Living with FSHD, Medical | Education | English | living-with-fshd medical | education | ||
| Consent Form for Participation in a Neuromuscular Research Study | Medical | Clinical Research, Clinical Trials, Research Motivation | English | medical | clinical-research clinical-trials research-motivation | ||||
| FSHD Muscle Cell Distribution | LINK | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | |||
| Muscle Surgery and Blood Samples from Patients with FSHD | Medical, Research | Clinical Research | English | medical research | clinical-research | ||||
| May 2012: A Long ncRNA Links Copy Number Variation to a Polycomb/Trithorax Epigenetic Switch in FSHD Muscular Dystrophy | LINK | Research | Clinical Research | English | research | clinical-research | |||
| July 2012: FSHD Family Studies of DUX4 Expression | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | ||||
| Sept 2014: FSH Society helps researchers develop an inducible DUX4 mouse model | LINK | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | |||
| Orphanet Report Series: Prevalence of Rare Diseases | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | ||||
| FSH Society Fundraising Workshop | FSHD Society Information | Fundraising | English | fshd-society-information | fundraising | ||||
| FSHDselfies Campaign | Living with FSHD | Social Support, Stories | English | living-with-fshd | social-support stories | ||||
| Progress Towards Clinical Trials | 2014 FSHD Patient Connect conference presentation by Kathryn Wagner | Research | Clinical Research, Clinical Trials | English | research | clinical-research clinical-trials | |||
| Consensus model for FSHD identifies opportunities for therapy | 2014 FSHD Patient Connect conference presentation by Stepehn Tapscott | Medical, Research | Basic Research, Clinical Research | English | medical research | basic-research clinical-research | |||
| Unlocking the Clinical Trial Toolbox | 2014 FSHD Patient Connect conference presentation by Jefferey Statland | Research | Basic Research, Clinical Research, Clinical Trials, Education | English | research | basic-research clinical-research clinical-trials education | |||
| FSHD & Nutrition | 2014 FSHD Patient Connect conference presentation by Sabrina Sacconi | Living with FSHD | Diet and Nutrition | English | living-with-fshd | diet-and-nutrition | |||
| Update on PT and Exercise | 2014 FSHD Patient Connect conference presentation by Shree Pandya | Medical, Wellness | Exercise, Physical Therapy | English | medical wellness | exercise physical-therapy | |||
| Modeling FSHD in zebrafish | 2014 FSHD Patient Connect conference presentation by Louis Kunkel | Research | Basic Research | English | research | basic-research | |||
| Genetically Similar Epigenetically Different | 2014 FSHD Patient Connect conference presentation by Peter Jones | Research | Advocacy | English | research | advocacy | |||
| Natural History Studies | 2014 FSHD Patient Connect conference presentation by Ray Huml | FSHD Society Information, Research | Advocacy | English | fshd-society-information research | advocacy | |||
| Multicenter infantile onset FSHD study | 2014 FSHD Patient Connect conference presentation by Yi-Wen Chen | Research | Early Onset or Infatile | English | research | early-onset-or-infatile | |||
| #FSHDselfies | Research | Advocacy | English | research | advocacy | ||||
| FSH Society FY2017 Written Testimony before the US House Appropriations Committee on NIH Research, April 16, 2016 | Research | Advocacy | English | research | advocacy | ||||
| FSH Society FY2017 Written Testimony before the US Senate Appropriations Committee on NIH Research, April 16, 2016 | Research | Advocacy | English | research | advocacy | ||||
| April 2015 Testimony Submitted to the US House Appropriations Committee | Research | Advocacy | English | research | advocacy | ||||
| March 2015 Testimony Submitted to U.S. Senate Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| May 2014 Testimony Submitted to U.S. Senate Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| March 2014 Testimony Submitted to U.S. House Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| May 2013 Testimony Submitted to U.S. Senate Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| March 2013 Testimony Submitted to U.S. House Appropriations Committee | Research | Advocacy | English | research | advocacy | ||||
| April 2012 Testimony Submitted to US Senate Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| March 2012 Testimony Submitted to US Senate Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| April 2011 Testimony Submitted to US Senate Appropriates Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| April 2010 Testimony Submitted to US Senate Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| April 2010 Testimony Submitted to US House of Representatives Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| May 2009 Testimony Submitted to US Senate Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| April 2008 Testimony Submitted to US Senate Appropriations Subcommittee | Research | Advocacy | English | research | advocacy | ||||
| March 2008 Testimony Submitted to US House of Representatives Appropriations Subcommittee | FSHD Society Information | Advocacy | English | fshd-society-information | advocacy | ||||
| March 2007 Testimony Submitted to Subcommittee on Labor, Health and Human Services | FSHD Society Information | Advocacy | English | fshd-society-information | advocacy | ||||
| March 2007 Testimony Submitted to US House of Representatives Appropriations Subcommittee | FSHD Society Information | Advocacy | English | fshd-society-information | advocacy | ||||
| March 2007 Testimony Submitted to US Senate Appropriations Subcommittee | FSHD Society Information | Advocacy | Englis | fshd-society-information | advocacy | ||||
| FY2019 Written Testimony to U.S. Senate Appropriations on NIH Funding | LINK | FSHD Society Information | Advocacy | English | fshd-society-information | advocacy | |||
| Honoring the Memory of Stephen Jacobsen, Karen Johnsen and William Michael | FSHD Society Information | Media Stories | English | fshd-society-information | media-stories | ||||
| Summary of 2013 - Year In Review | Research | Advocacy | English | research | advocacy | ||||
| Map of the FSHD-linked Genes | Research | Basic Research, Clinical Research | English | research | basic-research clinical-research | ||||
| Scapular Fixation Surgery | Dr. Leigh Ann Curl slide presentation | Medical | Scapular Winging | English | medical | scapular-winging | |||
| Breathing Health in FSHD | Joshua Benditt, MD, slides from 2012 patient conference | Medical | Breathing Problems, Sleep Problems | English | medical | breathing-problems sleep-problems | |||
| FSHD and Exercise (2014) by Julie Hershberg, PT | by Julie Hershberg, PT (2014) | Living with FSHD, Medical | Exercise, Physical Therapy | English | living-with-fshd medical | exercise physical-therapy | |||
| Physical Activity and Exercise in FSHD (2012) by Craig McDonald, MD | By Craig McDonald, MD (2012) | Living with FSHD, Medical, Research | Basic Research, Clinical Research, Exercise | English | living-with-fshd medical research | basic-research clinical-research exercise | |||
| Best Practice Guidelines on Genetic Diagnostics of FSHD | Medical, Research | Genetic Counseling, Genetic Testing | English | medical research | genetic-counseling genetic-testing | ||||
| The decision to stop working | A guide by Howard Chabner | Living with FSHD | Finances, Stories | English | living-with-fshd | finances stories | |||
| Resource list for finding information and help | by Bill Maclean | Living with FSHD | Social Support | English | living-with-fshd | social-support | |||
| Resource list for Navigating Intimate Relationships | by Hilary Michaels | Living with FSHD | Care Partner, Relationships, Social Support | English | living-with-fshd | care-partner relationships social-support | |||
| Managing FSHD: One Patient’s Perspective | A detailed, accessible guide by Howard Chabner | Living with FSHD, Wellness | Breathing Problems, Wheelchairs | English | living-with-fshd wellness | breathing-problems wheelchairs | |||
| 171st ENMC International Workshop- Standards of care and management of FSHD | 2010 standard of care | Medical | Patient Guidelines | English | medical | patient-guidelines | |||
| Evidence-based FSHD care guideline – Summary for patients & families. | Medical | Patient Guidelines | English | medical | patient-guidelines | ||||
| Evidence-based FSHD care guideline – Summary for clinicians. | Medical | Patient Guidelines | English | medical | patient-guidelines | ||||
| A Guide for Schools | Living with FSHD | Advocacy, Early Onset or Infatile, Pediatric | English | living-with-fshd | advocacy early-onset-or-infatile pediatric | ||||
| A Guide for Friends and Family | By Kelly Mahon, how to ask friends and family for the support you need when you have FSHD. | Living with FSHD | Advocacy, Social Support | English | living-with-fshd | advocacy social-support | |||
| Health Tips | Advocacy, Breathing Problems, Diet and Nutrition, Exercise, Physical Therapy | English | advocacy breathing-problems diet-and-nutrition exercise physical-therapy | ||||||
| Physical Therapy for FSHD Brochure | Physical Therapy and FSHD brochure by Shree Pandya, PT, DPT, MS and Kate Eichinger, PhD, PT, DPT, NCS | Living with FSHD, Medical | Exercise, Physical Therapy | English | living-with-fshd medical | exercise physical-therapy | |||
| Fact Sheet on FSHD / infantile-onset FSHD | Children, Early Onset or Infatile | English | children early-onset-or-infatile | ||||||
| About FSHD | FSHD symptoms, diagnosis, and genetics | Living with FSHD, Medical | Genetic Counseling, Genetic Testing, Newly Diagnosed | English | living-with-fshd medical | genetic-counseling genetic-testing newly-diagnosed | |||
| Tips for air travel with a power wheelchair | by Howard Chabner, lawyer, disabilities advocate, and world traveler. | Living with FSHD | Advocacy, Travel, Wheelchairs | English | living-with-fshd | advocacy travel wheelchairs | |||
| A physiatric approach to FSH muscular dystrophy | Physiatry or rehabilitation medicine coordinates multidisciplinary care essential for managing FSHD. By Susan Keeshin, MD | Living with FSHD, Medical | Diet and Nutrition, Exercise, Mobility, Orthotics, Pain, Physical Therapy | English | living-with-fshd medical | diet-and-nutrition exercise mobility orthotics pain physical-therapy | |||
| FSHD Advocate 2019 Issue 2 | Link | Living with FSHD, Mental Health, Research, Wellness | Basic Research, Clinical Research, Meditation, Supplements | English | living-with-fshd mental-health research wellness | basic-research clinical-research meditation supplements | |||
| FSHD Advocate 2019 Issue 1 | Link | Reporting from 2019 International Research Congress; follistatin, DUX4 structure; eye surgery; | Living with FSHD, Medical, Research | Basic Research, Clinical Research, Dry Eyes | English | living-with-fshd medical research | basic-research clinical-research dry-eyes | ||
| FSHD Advocate 2018 Issue 3 | Link | Antioxidants, DUX4 v PAX7, orthotics, ableism, high-intensity exercise, CRISPR, long-term disability | Living with FSHD, Medical, Research | Basic Research, Diet and Nutrition, Exercise, Insurance, Orthotics | English | living-with-fshd medical research | basic-research diet-and-nutrition exercise insurance orthotics |
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