| Titlename | Link | File Type | Description | Library Categories | Library Tags | hf:tax:library_category | hf:tax:library_tag | |
|---|---|---|---|---|---|---|---|---|
| Epicrispr Biotechnologies achieves milestones in developing groundbreaking therapy for FSHD | Link | Episcripr gets financing and IND from FDA | English, Research | Drug Development | english research | drug-development | ||
| Using HIPAA to Make Sure You Are Treatment Ready | website | Make sure your doctor adds G71.02 to your medical record | English, Medical, Research | Advocacy, Clinical Research, Drug Development, Insurance, Newly Diagnosed | english medical research | advocacy clinical-research drug-development insurance newly-diagnosed | ||
| Rebounding exercises | website | Blog post and video links about exercising on a mini-trampoline | English, Wellness | Exercise | english wellness | exercise | ||
| Anesthesia in surgery for people with FSHD | Video | Webinar and summary with Dr. Bruna Castro di Oliveira of MassGeneral Hospital | English, Medical | Anesthesia | english medical | anesthesia | ||
| Avidity Biosciences Completes Enrollment in Biomarker Cohort in Phase 1/2 FORTITUDE™ Trial | website | Update on Avidity’s trial recruitment | English, Research | Clinical Trials | english research | clinical-trials | ||
| Muscle fatigue in muscular dystrophies | Link | Research study on the nature of fatigue in FSHD and other NMDs | English, Medical, Research | Fatigue | english medical research | fatigue | ||
| ¿Qué tratamientos hay? | Link | Spanish-language podcast, “Treatments for FSHD?” | Research, Spanish | Clinical Trials, Drug Development | research spanish | clinical-trials drug-development | ||
| Nutrición | Podcast | Nutrition considerations for people with FSHD | Spanish, Wellness | Diet and Nutrition | spanish wellness | diet-and-nutrition | ||
| 2024 IRC Abstract Book | Brochure | Scientific abstracts from the 2024 International Research Congress on FSHD | English, 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 | English, Medical | Pediatric | english medical | pediatric | ||
| El estrés | Link | Podcast from FSHD Spain | Mental Health, Spanish, Wellness | mental-health spanish wellness | ||||
| Dutch FSHD care guideline (English translation) | Brochure | Evidence-based care guide focusing on pain, fatigue, exercise, communication | English, Medical, Wellness | Communication, Exercise, Fatigue, Pain | english medical wellness | communication exercise fatigue pain | ||
| ¿Qué es la FSHD? | Podcast | Hablar sobre los diferentes tratamientos | Research, Spanish | Clinical Research, Drug Development | research spanish | clinical-research drug-development | ||
| Finding the care team you need | Document | Women on Wellness discussion notes on Medicare, Home health services, physiatrists, and keeping a sense of humor. | English, 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 | English, 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 | English, 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 | English, 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 | English, Medical | Occupational Therapy, Orthotics, Physical Therapy | english medical | occupational-therapy orthotics physical-therapy | ||
| Tarjeta de Alerta Médica FSHD | Brochure | Traducción al español de la tarjeta de alerta médica de la Sociedad FSHD
| Medical, Spanish | Breathing Problems | medical spanish | breathing-problems | ||
| Getting treatments to young patients | Link | The MOVE Pediatric study is essential for clinical trials for children | English, Research | Pediatric | english research | pediatric | ||
| Why I exercise | Link | Frank Hanley of Feeling Fit with FSHD on the many benefits of exercise | English, Mental Health, Wellness | Exercise | english mental-health wellness | exercise | ||
| High-intensity exercise training in FSHD | website | High-intensity training is safe and improves fitness | English, 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 | English, Medical, Wellness | Disability Rights | english medical wellness | disability-rights | ||
| AVANCES EN EL CONOCIMIENTO DE LA DISTROFIA FACIO-ESCÁPULO-HUMERAL | Link | Genetics of FSHD (Spanish), slides by Dr. Pili Camaño | Medical, Spanish | Genetic Counseling, Genetic Testing | medical spanish | genetic-counseling genetic-testing | ||
| Insurance coverage for costly rare-disease treatments | Brochure | Guidance from Little Hercules Fdn | English, Medical | Advocacy, Drug Development, Insurance | english medical | advocacy drug-development insurance | ||
| FSHD and pregnancy | Brochure | From Dr. Emma Ciafaloni, Univ. of Rochester | English, Medical | Reproductive Health, Women | english medical | reproductive-health women | ||
| Monografia FSHD | Brochure | Folleto sobre FSHD
| Medical, Spanish | medical spanish | ||||
| Adjusting to a new environment | Brochure | Tips for finding new care providers, adapting a new home, making new friends | English, Wellness | Adaptations, Social Support | english wellness | adaptations social-support | ||
| Getting treatments to young patients | website | About the MOVE Peds study | English, 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 | English, Medical | Facial Weakness | english medical | facial-weakness | ||
| Changemaker: Archer Sverdrup | website | Archer co-founded Everything Early Onset | English, 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 | English, Living with FSHD, Wellness | Exercise | english living-with-fshd wellness | exercise | ||
| The Advocate, 2024 Issue 3 | Clinical Trial Readiness, notable FSHers, Society updates. | 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 | 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 emegency preparedness for older adults | Brochure | How to be prepared for emergencies and natural disasters if you have impaired mobility. | English, 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 | English, Living with FSHD | Adaptations, Home Renovation | english living-with-fshd | adaptations home-renovation | ||
| English, Living with FSHD, Medical, Wellness | Communication, Hearing Loss | english living-with-fshd medical wellness | communication hearing-loss | |||||
| It's alive! It's alive! | website | Robotic spoon enables independence in feeding | English, 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 | English, 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. | English, FSHD Society Information, Living with FSHD, Medical, Research, Wellness | Adaptations, Alternative Therapies, Disability Rights, Drug Development, Insurance, Mobility | english fshd-society-information living-with-fshd medical research wellness | adaptations alternative-therapies disability-rights drug-development insurance mobility | |||
| The FSHD Navigator | The FSHD Navigator helps families with FSHD find what they need to live their best lives.
| English, Living with FSHD, Medical, Research, Wellness | Newly Diagnosed, Website | english 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 | English, Research | Genetic Counseling, Genetic Testing | english research | genetic-counseling genetic-testing | ||
| English, Wellness | Diet and Nutrition | english wellness | diet-and-nutrition | |||||
| Ten things I wish someone had told me… | website | Advice on planning for the challenges of FSHD | English, 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. | English, 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. | English, Medical | Breathing Problems | english medical | breathing-problems | ||
| Medic alert card (2024 version0 | Link | Downloadable PDF wallet card to print on cardstock | English, 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 | English, 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.
| English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, Medical | Newly Diagnosed | english medical | newly-diagnosed | ||
| The History of FSH muscular dystrophy in a large Utah kindred | Video | Fascinating history of largest kindred of FSHD | English, Research | Genetic Counseling | english research | genetic-counseling | ||
| Orthotics for Knee Hyperextension and Spine issues in FSHD | Videos | Webinar by Bob Meier, certified orthotist | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 |
| English, Living with FSHD | Depression, Lonliness, Self Harm | english living-with-fshd | depression lonliness self-harm | ||
| English, 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 | English, Medical | Genetic Counseling, Genetic Testing, Reproductive Health, Women | english medical | genetic-counseling genetic-testing reproductive-health women | ||
| Orthotics for Knee Hyperextension | Video | Orthotist Bob Meier addresses FSHD knee issues | English, 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 | ||
| Nutrition and FSHD with Matt Beke | Video | Nutrition guidance from U Florida nutritionist | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, Medical | Newly Diagnosed | english medical | newly-diagnosed | ||
| Physical Therapy for Shoulder Issues in Kids with Maaike Pelsma | Video | Dutch expert discusses PT for children with FSHD | English, Medical | Children, Physical Therapy, Shoulder Weakness | english medical | children physical-therapy shoulder-weakness | ||
| FSHD University Annual Drug Update | Video |
| English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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) | English, 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 | English, Living with FSHD | Adaptations | english living-with-fshd | adaptations | ||
| Changing mindset about assistive technologies | Website | Assistive technologies enable us to live our best lives | English, 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 | English, Research | Clinical Trials | english research | clinical-trials | ||
| Transitioning to Adulthood | Video |
| English, 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 | English, 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 | English, 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 | English, 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. | English, Living with FSHD | Exercise | english living-with-fshd | exercise | |||
| Feeling Fit with low-impact seated exercises | Website | Video and a music playlist for exercising | English, Living with FSHD | Exercise | english living-with-fshd | exercise | ||
| Stay warm and safe | Website | Why cold temperatures are hard. Tips for keeping warm. | English, Living with FSHD | Adaptations | english living-with-fshd | adaptations | ||
| (Cautious) optimism in FSHD drug development | Website | Patients play a critical role | English, Research | Drug Development | english research | drug-development | ||
| Feeling Fit with Lonwabo Nene | Website | Exercises that have helped this FSHD patient | English, 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 | English, 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 | English, 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 | English, 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 | English, Research | Clinical Trials | english research | clinical-trials | ||
| What to do in a crisis | Website | Resources for coping with depression, anxiety, self harm, suicidal thoughts | English, 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 | English, 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 | English, 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 | English, Wellness | Fatigue | english wellness | fatigue | ||
| Adventures with a robotic leg brace | Website | The C-brace is helping a patient to walk again. | English, 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 | English, 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 | English, 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 | English, 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 | English, 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 | English, 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. | English, 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). | English, 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. | English, 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. | English, 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. | English, 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. | English, 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. | English, Research | Basic Research, Clinical Research | english research | basic-research clinical-research | ||
| Kitchen Confidential | Website | Tips and tricks to make kitchen and cooking tasks easier. | English, 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. | English, Medical, Wellness | english medical wellness | ||||
| Clinical care vs. clinical research | Website | Explains the difference between research and medical care. | English, 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. | English, 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. | English, Wellness | Exercise | english wellness | exercise | ||
| The children of FSHD – they exist, too | Website | Trial readiness for pediatric and early-onset FSHD. | English, 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 | English, Medical | Communication, Videos | english medical | communication videos | |||
| Women’s health with Dr. Loralei Thornberg | Website | English, 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. | English, 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). | English, 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. | English, 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. | English, 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. | English, Wellness | Exercise | english wellness | exercise | ||
| Yoga adapted for FSHD | Brochure | Feeling Fit with FSHD handout by Rita Lynn on adaptive yoga. | English, 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. | English, 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. | English, 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. | English, FSHD Society Information, Living with FSHD, Medical, Research | english fshd-society-information living-with-fshd medical research | ||||
| FSHD Advocate 2023 Issue 1 | Link | English, FSHD Society Information, Living with FSHD, Medical, Research | english fshd-society-information living-with-fshd medical research | |||||
| Understanding and Navigating Medicare | Excellent guide from Global Genes for people with long-term disability on how to navigate Medicare coverage. | English, 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. | English, 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. | English, FSHD Society Information, Living with FSHD, Medical, Research | english fshd-society-information living-with-fshd medical research | ||||
| Ficha técnica FSHD | Brochure | Folleto sobre la distrofia muscular FSH | Medical, Spanish | Newly Diagnosed | medical spanish | newly-diagnosed | ||
| 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, Spanish, Wellness | Families, Newly Diagnosed | mental-health spanish wellness | families newly-diagnosed | ||
| Fisioterapia en la FSHD | Brochure | Folleto de la fundación holandesa FSHD sobre fisioterapia | Living with FSHD, Medical, Spanish | Exercise, Physical Therapy | living-with-fshd medical spanish | exercise physical-therapy | ||
| Terapia física | Brochure | Folleto de la FSHD Society sobre fisioterapia | Living with FSHD, Medical, Spanish | Physical Therapy | living-with-fshd medical spanish | physical-therapy | ||
| El dolor en la FSHD | website | Damos a conocer un estudio que analiza el dolor en FSHD | Living with FSHD, Medical, Spanish | Pain | living-with-fshd medical spanish | pain | ||
| Manifestaciones extramusculares en FSHD | website | FSHD manifestarse en otros órganos del cuerpo | Medical, Spanish | Bone Health, Breathing Problems, Coat's Disease, Fatigue, Hearing Loss, Heart Health, Pain, Sleep Problems | medical spanish | 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, Spanish | Genetic Counseling, Genetic Testing | medical research spanish | genetic-counseling genetic-testing | ||
| Tratamiento génico en FSHD | website | Tratamiento génico en FSHD | Research, Spanish | Drug Development | research spanish | drug-development | ||
| Empresas biomédicas investigadoras de tratamientos FSHD | website | Empresas biomédicas investigadoras de tratamientos FSHD | Research, Spanish | Drug Development | research spanish | drug-development | ||
| Estimulación eléctrica muscular | website | Información básica de FSHD España | Medical, Spanish | Physical Therapy | medical spanish | physical-therapy | ||
| FSHD Advocate 2022 Issue 2 | Link | Focus on 2022 international research congress, FSHD Connect | English, 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 | English | 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 | English, Research | Basic Research, Clinical Research | english research | basic-research clinical-research | ||
| FSHD Advocate 2021 Issue 2 | LINK | English, 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. | English, Medical | Core Weakness, Spine Problems | english medical | core-weakness spine-problems | |||
| FSHD Advocate 2021 Issue 1 | Activate! Research, community, and self | English, 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 | English, 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. | English, 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. | English, 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. | English, 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 | English, Living with FSHD, Mental Health | english living-with-fshd mental-health | ||||
| FSHD Advocate 2020 Issue 1 | Link | Everything you ever wanted to know about the path to clinical trials | English, Medical, Research | Clinical Research, Clinical Trials | english medical research | clinical-research clinical-trials | ||
| FSHD Advocate 2019 Issue 3 | Link | How advocacy transforms lives | English, Living with FSHD | Advocacy | english living-with-fshd | advocacy | ||
| FSHD Society 2012 Atlanta Meeting | Link | YouTube | Video from the FSH Society’s 2012 patient education conference in Atlanta. | English, Living with FSHD, Medical, Research | english living-with-fshd medical research | ||||
| FSHD Connect 2014 | Link | YouTube | Video from the FSH Society’s 2014 patient education conference. Facial surgery, nutrition, exercise were among the topics. | English, Living with FSHD, Medical, Research | Diet and Nutrition, Facial Weakness | english living-with-fshd medical research | diet-and-nutrition facial-weakness | ||
| FSHD Connect 2016 | Link | YouTube | Videos from the FSH Society’s 2016 Connect conference in Boston. | English, Living with FSHD, Medical, Research | english living-with-fshd medical research | ||||
| FSHD Connect 2018 | Link | YouTube | From the FSH Society’s 2018 Connect conference in Las Vegas. | English, Living with FSHD, Medical, Research | english living-with-fshd medical research | ||||
| FSHD Society Public Service Announcements | Link | YouTube | Our playlist of videos to raise public awareness of FSHD. | English, FSHD Society Information, Living with FSHD | english fshd-society-information living-with-fshd | ||||
| FSHD Society Events | Link | YouTube | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | English | english | ||||
| FSHD Society Living with FSHD | Link | YouTube | Our YouTube playlist of videos about living with FSHD. | English, Living with FSHD | english living-with-fshd | ||||
| FSHD Society Medical Seminars | Link | YouTube | Our YouTube playlist of videos about medical management of FSHD. | English, Medical | english medical | ||||
| FSHD Society Research Seminars | Link | YouTube | Our YouTube playlist of talks about FSHD research. | English, Research | Basic Research, Clinical Research | english research | basic-research clinical-research | ||
| The Resource Finder at Kennedy Krieger Institute | Link | For patients and families from world-leading muscular dystrophy institute. | English, Living with FSHD | english living-with-fshd | ||||
| FSH Society Radio Show Live-15 with guests Beth Johnston and Leigh Reynolds | Podcast | Audio | mp3 | English | english | |||||
| FSH Society Radio Show Live - 16 guest Kristin Duquette | Podcast | Audio | mp3 | English | english | |||||
| FSH Society Radio Show Live-17 guest Taylor Quigg | Podcast | Audio | mp3 | English | english | |||||
| FSH Society Radio Show live-18 guest Skylar Conover | Podcast | Audio | mp3 | English | english | |||||
| FSH Society Radio Show live-19 guest Amanda Rickard | Podcast | Audio | mp3 | Amanda Rickard describes research on FSHD. | English, Research | Basic Research, Drug Development, Podcast | english research | basic-research drug-development podcast | ||
| FSH Society Radio Show Live-20 Guest June Kinoshita | Podcast | Audio | mp3 | English | english | |||||
| FSH Society webinar with Dr Rabi Tawil | Link | Talk by leading FSHD neurologist on best care practices. | English, Medical | english medical | ||||
| 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. | English, 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. | English, 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. | English, Living with FSHD, Wellness | Exercise, Videos | english living-with-fshd wellness | exercise videos | ||
| FSH Society Michigan Meeting | Link | Exercises to wake up your muscles | English, 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 | English, Living with FSHD | Exercise | english living-with-fshd | exercise | ||
| Our YouTube channel has dozens of educational videos | Link | Our YouTube playlist of exercise and fitness for FSHD | English, Living with FSHD, Wellness | Exercise | english living-with-fshd wellness | exercise | ||
| Dealing with Physical Decline from Muscular Dystrophy, by Don Nemke | Detailed ideas for home renovation and accessiblity by Don Nemke | English, 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 | English, 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 | English, 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. | English, 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 | English, Medical | english medical | |||||
| Evidence-based FSHD care guideline AAN tools and materials | Link | English, Medical | english medical | |||||
| Evidence-based FSHD care guideline – Summary for patients & families | Link | Patient-friendly summary of 2015 standard of care for FSHD | English, Medical | english medical | ||||
| Evidence-based FSHD care guideline – Summary for clinicians | Link | Summary of 2015 care guideline to share with your doctor | English, Medical | english medical | ||||
| Medical Equipment: Access Solutions and Respiratory Therapy by Howard Chabner | Guidance from lawyer and patient advocate Howard Chabner | English, Medical | Breathing Problems, Insurance | english medical | breathing-problems insurance | |||
| Early-onset (infantile) FSHD Fact Sheet | One page flyer with facts about early-onset FSHD | English, 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. | English, Living with FSHD | english living-with-fshd | |||||
| An Overview of Anesthetic Concerns by Raymond Huml | Review of medical literature on anesthesia for neuromuscular patients | English, Medical | Anesthesia | english medical | anesthesia | |||
| Guidelines for Physical Therapists Treating Clients with Neuromuscular Disorders | Medicare and maintenance physical therapy. Know your rights. | English, 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 | English, Medical | Genetic Testing, Insurance | english medical | genetic-testing insurance | ||
| Evidence-based FSHD Care Guideline + Online Resources | Pamphlet summarizing 2015 care guideline for FSHD | English, Medical | english medical | |||||
| Resources for FSHD patients & families | English | english | ||||||
| Physical Therapy for FSHD brochure (in Chinese) | English, Mandarin | Physical Therapy | english mandarin | physical-therapy | ||||
| FSH Society Medical Alert card | English | english | ||||||
| About FSHD (in Spanish; in Chinese) | About FSHD (in Spanish; in Chinese) | Downloadable overview of FSHD for people living with the condition | English, Living with FSHD, Mandarin, Medical, Spanish | english living-with-fshd mandarin medical spanish | ||||
| FSH Watch: Vol. 6, No. 1, Fall 1999 | The FSH Society’s newsletter. Research and advocacy focus. | English, Research | english research | |||||
| FSH Watch: Vol. 7, No. 1, Spring 2001 | FSH Society’s newsletter. Research and government policy. | English | english | |||||
| FSH Watch: Vol. 8, No. 1, Winter 2003 | English | english | ||||||
| FSH Watch: Vol. 8, No. 2, Spring 2003 | English | english | ||||||
| FSH Watch Newsletter Summer 2005: Vol 10, No. 1. | 48 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Summer 2007 | 52 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Fall 2007 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Winter 2008 | 16 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Spring 2008 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Summer 2008 Research Issue | 24 pages (PDF) | English | english | |||||
| FSH Watch Newsletter FSHD Wellstone MD CRC | 2 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Fall 2008 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Winter 2009 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Spring 2009 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Summer 2009 Research Issue | 28 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Fall 2009 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Winter 2010 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Spring 2010 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Summer Fall Research 2010 | 24 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Winter 2011 | 16 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Spring 2011 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Summer 2011 Research Issue | 28 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Fall 2011 | 12 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Winter 2012 | 16 pages (PDF) | English, FSHD Society Information | english fshd-society-information | |||||
| FSH Watch Newsletter Summer Fall 2012 | The FSH Society’s newsletter. 20 pages (PDF) on research, advocacy, community profiles | English, Living with FSHD, Medical, Research | english living-with-fshd medical research | |||||
| FSH Watch Newsletter Winter 2013 | 28 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Spring 2013 | 20 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Summer Fall 2013 Annual Research Issue | 32 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Winter 2014 | 28 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Spring 2014 | 20 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Summer Fall 2014 Annual Research Issue | 24 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Winter 2015 | 24 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Spring/Summer 2015 | 28 pages (PDF) | English | english | |||||
| FSH Watch Newsletter Fall 2015 | English | english | ||||||
| FSH Watch 2016 Issue 1 | English | english | ||||||
| FSH Watch 2016 Issue 2 | English | english | ||||||
| FSH Watch 2016 Issue 3 | English | english | ||||||
| FSH Watch 2017 Issue 1 | English | english | ||||||
| FSH Watch 2017 Issue 2 | English | english | ||||||
| FSH Watch 2017 Issue 3 | English | english | ||||||
| FSH Watch 2018 Issue 1 | English | english | ||||||
| FSH Watch 2018 – Issue 2 | English | english | ||||||
| Consent Form for Participation in a Neuromuscular Research Study | English | english | ||||||
| Muscle Surgery and Blood Samples from Patients with FSHD | English | english | ||||||
| May 2012: A Long ncRNA Links Copy Number Variation to a Polycomb/Trithorax Epigenetic Switch in FSHD Muscular Dystrophy | LINK | English | english | |||||
| July 2012: FSHD Family Studies of DUX4 Expression | English | english | ||||||
| Sept 2014: FSH Society helps researchers develop an inducible DUX4 mouse model | LINK | English | english | |||||
| Orphanet Report Series: Prevalence of Rare Diseases | English | english | ||||||
| 2012 FSH Society patient conference, Atlanta | LINK | Videos | English | english | ||||
| FSH Society Fundraising Workshop | English | english | ||||||
| FSHDselfies Campaign | English | english | ||||||
| Progress Towards Clinical Trials | 2014 FSHD Patient Connect conference presentation by Kathryn Wagner | English | english | |||||
| Consensus model for FSHD identifies opportunities for therapy | 2014 FSHD Patient Connect conference presentation by Stepehn Tapscott | English, Research | english research | |||||
| Unlocking the Clinical Trial Toolbox | 2014 FSHD Patient Connect conference presentation by Jefferey Statland | English | english | |||||
| FSHD & Nutrition | 2014 FSHD Patient Connect conference presentation by Sabrina Sacconi | English, 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 | English, Medical, Wellness | Exercise, Physical Therapy | english medical wellness | exercise physical-therapy | |||
| Modeling FSHD in zebrafish | 2014 FSHD Patient Connect conference presentation by Louis Kunkel | English, Research | english research | |||||
| Genetically Similar Epigenetically Different | 2014 FSHD Patient Connect conference presentation by Peter Jones | English, Research | english research | |||||
| Natural History Studies | 2014 FSHD Patient Connect conference presentation by Ray Huml | English | english | |||||
| Multicenter infantile onset FSHD study | 2014 FSHD Patient Connect conference presentation by Yi-Wen Chen | English, Research | Early Onset or Infatile | english research | early-onset-or-infatile | |||
| #FSHDselfies | English | english | ||||||
| FSH Society FY2017 Written Testimony before the US House Appropriations Committee on NIH Research, April 16, 2016 | English | english | ||||||
| FSH Society FY2017 Written Testimony before the US Senate Appropriations Committee on NIH Research, April 16, 2016 | English | english | ||||||
| April 2015 Testimony Submitted to the US House Appropriations Committee | English | english | ||||||
| March 2015 Testimony Submitted to U.S. Senate Appropriations Subcommittee | English | english | ||||||
| May 2014 Testimony Submitted to U.S. Senate Appropriations Subcommittee | English | english | ||||||
| March 2014 Testimony Submitted to U.S. House Appropriations Subcommittee | English | english | ||||||
| May 2013 Testimony Submitted to U.S. Senate Appropriations Subcommittee | English | english | ||||||
| March 2013 Testimony Submitted to U.S. House Appropriations Committee | English | english | ||||||
| April 2012 Testimony Submitted to US Senate Appropriations Subcommittee | English | english | ||||||
| March 2012 Testimony Submitted to US Senate Appropriations Subcommittee | English | english | ||||||
| April 2011 Testimony Submitted to US Senate Appropriates Subcommittee | English | english | ||||||
| April 2010 Testimony Submitted to US Senate Appropriations Subcommittee | English | english | ||||||
| April 2010 Testimony Submitted to US House of Representatives Appropriations Subcommittee | English | english | ||||||
| May 2009 Testimony Submitted to US Senate Appropriations Subcommittee | English | english | ||||||
| April 2008 Testimony Submitted to US Senate Appropriations Subcommittee | English | english | ||||||
| March 2008 Testimony Submitted to US House of Representatives Appropriations Subcommittee | English | english | ||||||
| March 2007 Testimony Submitted to Subcommittee on Labor, Health and Human Services | English | english | ||||||
| March 2007 Testimony Submitted to US House of Representatives Appropriations Subcommittee | English | english | ||||||
| March 2007 Testimony Submitted to US Senate Appropriations Subcommittee | English | english | ||||||
| Honoring the Memory of Stephen Jacobsen, Karen Johnsen and William Michael | English | english | ||||||
| Summary of 2013 | English | english | ||||||
| Map of the FSHD-linked Genes | English | english | ||||||
| Scapular Fixation Surgery | Dr. Leigh Ann Curl slide presentation | English, Medical | Scapular Winging | english medical | scapular-winging | |||
| Breathing Health in FSHD | Joshua Benditt, MD, slides from 2012 patient conference | English, Medical | Breathing Problems, Sleep Problems | english medical | breathing-problems sleep-problems | |||
| FSHD and Exercise (2014) by Julie Hershberg, PT | by Julie Hershberg, PT (2014) | English, 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) | English | english | |||||
| Best Practice Guidelines on Genetic Diagnostics of FSHD | English | english | ||||||
| The decision to stop working | A guide by Howard Chabner | English, Living with FSHD | english living-with-fshd | |||||
| Resource list for finding information and help | by Bill Maclean | English | english | |||||
| Resource list for Navigating Intimate Relationships | by Hilary Michaels | English | english | |||||
| Managing FSHD: One Patient’s Perspective | A detailed, accessible guide by Howard Chabner | English, 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 | English, Medical | english medical | |||||
| Evidence-based FSHD care guideline – Summary for patients & families. | English | english | ||||||
| Evidence-based FSHD care guideline – Summary for clinicians. | English | english | ||||||
| A Guide for Schools | English, 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. | English, Living with FSHD | Advocacy, Social Support | english living-with-fshd | advocacy social-support | |||
| Health Tips | English | english | ||||||
| Physical Therapy for FSHD Brochure | Physical Therapy and FSHD brochure by Shree Pandya, PT, DPT, MS and Kate Eichinger, PhD, PT, DPT, NCS | English, Living with FSHD, Medical | Exercise, Physical Therapy | english living-with-fshd medical | exercise physical-therapy | |||
| Fact Sheet on FSHD / infantile-onset FSHD | English | english | ||||||
| About the FSH Society | English | english | ||||||
| About FSHD | FSHD symptoms, diagnosis, and genetics | English, 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. | English, 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 | English, 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 | English, 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; | English, 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 | English, 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 |
Lighting the Way to a Cure