Image | Titlename | Link | Description | File Type | Library Categories | Library Tags | hf:tax:library_category | hf:tax:library_tag |
---|---|---|---|---|---|---|---|---|
Kitchen Confidential | Tips and tricks to make kitchen and cooking tasks easier. | Website | 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 | Dr. Nicol Voermans’ holistic approach to patients’ well-being. | Website | English, Medical, Wellness | english medical wellness | ||||
Clinical care vs. clinical research | Explains the difference between research and medical care. | Website | English, Medical, Research | Clinical Research, Clinical Trials | english medical research | clinical-research clinical-trials | ||
Engineering new muscles | Engineering a scaffold allowing muscle stem cells to rebuild injured muscles. | Website | English, Research | Basic Research, Clinical Research | english research | basic-research clinical-research | ||
Shaking Qigong to relax your body | Shaking Qi Gong opens up our joints or energy gates and meridians allowing the free flow of Qi (energy) in our body. | Website | English, Wellness | Exercise | english wellness | exercise | ||
The children of FSHD – they exist, too | Trial readiness for pediatric and early-onset FSHD. | Website | 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 | |||
The FSHD Navigator | Website | English, Living with FSHD, Medical, Research, Wellness | Newly Diagnosed, Website | english living-with-fshd medical research wellness | newly-diagnosed website | |||
Women’s health with Dr. Loralei Thornberg | Website | English, Medical | Videos, Women | english medical | videos women | |||
Dr. Anthony Romeo on scapular surgery | Website | English, Medical | Shoulder Weakness, Videos | english medical | shoulder-weakness videos | |||
Vita Therapeutics’ cell-based therapy update | News and video updates about the company’s strategy to create stems cells which evade the immune system. | Blog | English, Research | Drug Development | english research | drug-development | ||
Statins (cholesterol-lowering drugs) and muscular dystrophy | A very helpful article on the risks and benefits of taking statins (cholesterol-lowering drugs). | Website | English, Medical | Heart Health, Medication | english medical | heart-health medication | ||
Every person’s effort takes us closer to the tipping point | From our 2024 Volunteer Leadership Summit, chapter and Walk & Roll leaders talk about the transformative impact of working together. | Website | English, Living with FSHD | Advocacy, Social Support | english living-with-fshd | advocacy social-support | ||
FSHD Representation in Film Fest Favorite ‘Good Bad Things’ | A film by a screenwriter and actor with FSHD is taking top prizes on the film festival circuit. | Website | English, Living with FSHD | Ableism | english living-with-fshd | ableism | ||
Understanding your FSHD | Lonwabo Nene says being able to describe accurately how FSHD affects your body is key to taking charge of your health. | Link | English, Wellness | Exercise | english wellness | exercise | ||
Yoga adapted for FSHD | Feeling Fit with FSHD handout by Rita Lynn on adaptive yoga. | Brochure | 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 | This issue of FSHD Advocate features Better Life FSHD. Additional articles about: a holistic approach to community and care (J. Kinoshita); Project Mercury updates (K. Kahtava); broader views on treatment options (N. Voermanns); the FSHD Patient Navigator (A. Gilmore); the 2023 Walk & Roll to Cure FSHD (B. Johnston & E. Saxon); clinical care vs. clinical research (A. Hill); engineering new muscles (F. Thys); children and youth with FSHD (A. Roets); and the FACT Alliance (J. Arjomand). | Link | English, FSHD Society Information, Living with FSHD | Ableism, Adaptations | english fshd-society-information living-with-fshd | ableism adaptations | ||
FSHD Advocate 2023 Issue 2 | 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. | Link | ||||||
FSHD Advocate 2023 Issue 1 | Link | |||||||
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 | |||||||
FSHD Advocate 2022 Issue 2 | Link | |||||||
FSHD Advocate 2022 Issue 1 | Link | |||||||
FSHD Advocate 2021 Issue 3 | Link | |||||||
FSHD Advocate 2021 Issue 2 | LINK | |||||||
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 | ||||||||
FSHD Advocate 2020 Issue 3 | LINK | |||||||
Voice of the Patient Report | Landmark report on FSHD’s disease burden and unmet medical need, submitted to the FDA in 2020. | Book | English, Research | Advocacy, Clinical Research, Clinical Trials | english 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 & Answers About Muscular Dystrophy (First Edition, 2020) | 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. | Link | 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 | |||||||
FSHD Advocate 2020 Issue 1 | Link | |||||||
FSHD Advocate 2019 Issue 3 | Link | |||||||
FSHD Society 2012 Atlanta Meeting | 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. | Link | YouTube | ||||||
FSHD Connect 2014 | 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. | Link | YouTube | ||||||
FSHD Connect 2016 | 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. | Link | YouTube | ||||||
FSHD Connect 2018 | 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. | Link | YouTube | ||||||
FSHD Society Public Service Announcements | 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. | Link | YouTube | ||||||
FSHD Society Events | 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. | Link | YouTube | ||||||
FSHD Society Living with FSHD | 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. | Link | YouTube | ||||||
FSHD Society Medical Seminars | 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. | Link | YouTube | ||||||
FSHD Society Research Seminars | 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. | Link | YouTube | ||||||
The Resource Finder at Kennedy Krieger Institute | Please contact us to recommend more web resources. | Link | ||||||
FSH Society Radio Show Live-15 with guests Beth Johnston and Leigh Reynolds | Podcast | Audio | mp3 | |||||||
FSH Society Radio Show Live - 16 guest Kristin Duquette | Podcast | Audio | mp3 | |||||||
FSH Society Radio Show Live-17 guest Taylor Quigg | Podcast | Audio | mp3 | |||||||
FSH Society Radio Show live-18 guest Skylar Conover | Podcast | Audio | mp3 | |||||||
FSH Society Radio Show live-19 guest Amanda Rickard | Amanda Rickard describes research on FSHD. | Podcast | Audio | mp3 | 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 | |||||||
FSH Society webinar with Dr Rabi Tawil | Link | |||||||
Facial surgery methods for Facioscapulohumeral Muscular Dystrophy | Link | |||||||
Dr. Anthony Romeo describes scapularthoracic fusion surgery for FSHD | Link | |||||||
FSH Society – Introduction to yoga for people with FSHD | Link | |||||||
FSH Society Michigan Meeting | Waking up your muscles | Link | ||||||
Muscle Activation Exercises with Lynnette Rasmussen FSH Society | Link | |||||||
Our YouTube channel has dozens of educational videos | Link | |||||||
Dealing with Physical Decline from Muscular Dystrophy, by Don Nemke | by Don Nemke | |||||||
A Guide for Schools | ||||||||
FSHD and Social Support: A Guide for Friends and Family | ||||||||
You Are Not Alone. A Guide for the Newly Diagnosed | ||||||||
171st ENMC International Workshop- Standards of care and management of FSHD | ||||||||
Evidence-based FSHD care guideline AAN tools and materials | Link | |||||||
Evidence-based FSHD care guideline – Summary for patients & families | Link | |||||||
Evidence-based FSHD care guideline – Summary for clinicians | Useful professional publications to share with your doctor | Link | ||||||
Medical Equipment: Access Solutions and Respiratory Therapy by Howard Chabner | ||||||||
Early-onset (infantile) FSHD Fact Sheet | ||||||||
FSHD Fact Sheet | ||||||||
An Overview of Anesthetic Concerns by Raymond Huml | ||||||||
Guidelines for Physical Therapists Treating Clients with Neuromuscular Disorders | ||||||||
Letter Requesting Insurance Coverage for Genetic Testing (Word Doc Templates) | DOC | DOCX | |||||||
Evidence-based FSHD Care Guideline + Online Resources | ||||||||
Resources for FSHD patients & families | ||||||||
Physical Therapy for FSHD brochure (in Chinese) | ||||||||
FSH Society Medical Alert card | ||||||||
About FSHD (in Spanish; in Chinese) | About FSHD (in Spanish; in Chinese) | |||||||
FSH Watch: Vol. 6, No. 1, Fall 1999 | ||||||||
FSH Watch: Vol. 7, No. 1, Spring 2001 | ||||||||
FSH Watch: Vol. 8, No. 1, Winter 2003 | ||||||||
FSH Watch: Vol. 8, No. 2, Spring 2003 | ||||||||
FSH Watch Newsletter Summer 2005: Vol 10, No. 1. | 48 pages (PDF) | |||||||
FSH Watch Newsletter Summer 2007 | 52 pages (PDF) | |||||||
FSH Watch Newsletter Fall 2007 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Winter 2008 | 16 pages (PDF) | |||||||
FSH Watch Newsletter Spring 2008 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Summer 2008 Research Issue | 24 pages (PDF) | |||||||
FSH Watch Newsletter FSHD Wellstone MD CRC | 2 pages (PDF) | |||||||
FSH Watch Newsletter Fall 2008 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Winter 2009 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Spring 2009 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Summer 2009 Research Issue | 28 pages (PDF) | |||||||
FSH Watch Newsletter Fall 2009 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Winter 2010 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Spring 2010 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Summer Fall Research 2010 | 24 pages (PDF) | |||||||
FSH Watch Newsletter Winter 2011 | 16 pages (PDF) | |||||||
FSH Watch Newsletter Spring 2011 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Summer 2011 Research Issue | 28 pages (PDF) | |||||||
FSH Watch Newsletter Fall 2011 | 12 pages (PDF) | |||||||
FSH Watch Newsletter Winter 2012 | 16 pages (PDF) | |||||||
FSH Watch Newsletter Summer Fall 2012 | 20 pages (PDF) | |||||||
FSH Watch Newsletter Winter 2013 | 28 pages (PDF) | |||||||
FSH Watch Newsletter Spring 2013 | 20 pages (PDF) | |||||||
FSH Watch Newsletter Summer Fall 2013 Annual Research Issue | 32 pages (PDF) | |||||||
FSH Watch Newsletter Winter 2014 | 28 pages (PDF) | |||||||
FSH Watch Newsletter Spring 2014 | 20 pages (PDF) | |||||||
FSH Watch Newsletter Summer Fall 2014 Annual Research Issue | 24 pages (PDF) | |||||||
FSH Watch Newsletter Winter 2015 | 24 pages (PDF) | |||||||
FSH Watch Newsletter Spring/Summer 2015 | 28 pages (PDF) | |||||||
FSH Watch Newsletter Fall 2015 | ||||||||
FSH Watch 2016 Issue 1 | ||||||||
FSH Watch 2016 Issue 2 | ||||||||
FSH Watch 2016 Issue 3 | ||||||||
FSH Watch 2017 Issue 1 | ||||||||
FSH Watch 2017 Issue 2 | ||||||||
FSH Watch 2017 Issue 3 | ||||||||
FSH Watch 2018 Issue 1 | ||||||||
FSH Watch 2018 – Issue 2 | ||||||||
Consent Form for Participation in a Neuromuscular Research Study | ||||||||
Muscle Surgery and Blood Samples from Patients with FSHD | ||||||||
May 2012: A Long ncRNA Links Copy Number Variation to a Polycomb/Trithorax Epigenetic Switch in FSHD Muscular Dystrophy | LINK | |||||||
July 2012: FSHD Family Studies of DUX4 Expression | ||||||||
Sept 2014: FSH Society helps researchers develop an inducible DUX4 mouse model | LINK | |||||||
Orphanet Report Series: Prevalence of Rare Diseases | ||||||||
2012 FSH Society patient conference, Atlanta | Videos | LINK | ||||||
FSH Society Fundraising Workshop | ||||||||
FSHDselfies Campaign | ||||||||
Progress Towards Clinical Trials | 2014 FSHD Patient Connect conference presentation by Kathryn Wagner | |||||||
Consensus model for FSHD identifies opportunities for therapy | 2014 FSHD Patient Connect conference presentation by Stepehn Tapscott | |||||||
Unlocking the Clinical Trial Toolbox | 2014 FSHD Patient Connect conference presentation by Jefferey Statland | |||||||
FSHD & Nutrition | 2014 FSHD Patient Connect conference presentation by Sabrina Sacconi | |||||||
Update on PT and Exercise | 2014 FSHD Patient Connect conference presentation by Shree Pandya | |||||||
Modeling FSHD in zebrafish | 2014 FSHD Patient Connect conference presentation by Louis Kunkel | |||||||
Genetically Similar Epigenetically Different | 2014 FSHD Patient Connect conference presentation by Peter Jones | |||||||
Natural History Studies | 2014 FSHD Patient Connect conference presentation by Ray Huml | |||||||
Multicenter infantile onset FSHD study | 2014 FSHD Patient Connect conference presentation by Yi-Wen Chen | |||||||
#FSHDselfies | ||||||||
FSH Society FY2017 Written Testimony before the US House Appropriations Committee on NIH Research, April 16, 2016 | ||||||||
FSH Society FY2017 Written Testimony before the US Senate Appropriations Committee on NIH Research, April 16, 2016 | ||||||||
April 2015 Testimony Submitted to the US House Appropriations Committee | ||||||||
March 2015 Testimony Submitted to U.S. Senate Appropriations Subcommittee | ||||||||
May 2014 Testimony Submitted to U.S. Senate Appropriations Subcommittee | ||||||||
March 2014 Testimony Submitted to U.S. House Appropriations Subcommittee | ||||||||
May 2013 Testimony Submitted to U.S. Senate Appropriations Subcommittee | ||||||||
March 2013 Testimony Submitted to U.S. House Appropriations Committee | ||||||||
April 2012 Testimony Submitted to US Senate Appropriations Subcommittee | ||||||||
March 2012 Testimony Submitted to US Senate Appropriations Subcommittee | ||||||||
April 2011 Testimony Submitted to US Senate Appropriates Subcommittee | ||||||||
April 2010 Testimony Submitted to US Senate Appropriations Subcommittee | ||||||||
April 2010 Testimony Submitted to US House of Representatives Appropriations Subcommittee | ||||||||
May 2009 Testimony Submitted to US Senate Appropriations Subcommittee | ||||||||
April 2008 Testimony Submitted to US Senate Appropriations Subcommittee | ||||||||
March 2008 Testimony Submitted to US House of Representatives Appropriations Subcommittee | ||||||||
March 2007 Testimony Submitted to Subcommittee on Labor, Health and Human Services | ||||||||
March 2007 Testimony Submitted to US House of Representatives Appropriations Subcommittee | ||||||||
March 2007 Testimony Submitted to US Senate Appropriations Subcommittee | ||||||||
Honoring the Memory of Stephen Jacobsen, Karen Johnsen and William Michael | ||||||||
Summary of 2013 | ||||||||
Map of the FSHD-linked Genes | ||||||||
Scapular Fixation Surgery | ||||||||
Breathing Health in FSHD | ||||||||
FSHD and Exercise (2014) by Julie Hershberg, PT | by Julie Hershberg, PT (2014) | |||||||
Physical Activity and Exercise in FSHD (2012) by Craig McDonald, MD | By Craig McDonald, MD (2012) | |||||||
Best Practice Guidelines on Genetic Diagnostics of FSHD | ||||||||
The decision to stop working | by Howard Chabner | |||||||
Resource list for finding information and help | by Bill Maclean | |||||||
Resource list for Navigating Intimate Relationships | by Hilary Michaels | |||||||
Managing FSHD: One Patient’s Perspective | By Howard Chabner | |||||||
171st ENMC International Workshop- Standards of care and management of FSHD | ||||||||
Evidence-based FSHD care guideline – Summary for patients & families. | ||||||||
Evidence-based FSHD care guideline – Summary for clinicians. | ||||||||
A Guide for Schools | ||||||||
A Guide for Friends and Family | ||||||||
Health Tips | ||||||||
Physical Therapy for FSHD Brochure | Physical Therapy and FSHD brochure by Shree Pandya, PT, DPT, MS and Kate Eichinger, PhD, PT, DPT, NCS | |||||||
Fact Sheet on FSHD / infantile-onset FSHD | ||||||||
About the FSH Society | ||||||||
About FSHD | ||||||||
Tips for air travel with a power wheelchair | by Howard Chabner, lawyer, disabilities advocate, and world traveler. | |||||||
A physiatric approach to FSH muscular dystrophy | by Susan Keeshin, MD, Shirley Ryan Abilities Lab | |||||||
FSHD Advocate 2019 Issue 2 | Link | |||||||
FSHD Advocate 2019 Issue 1 | Link | |||||||
FSHD Advocate 2018 Issue 3 | Link |