Titlename | Link | File Type | Description | Library Categories | Library Tags | hf:tax:library_category | hf:tax:library_tag | |
---|---|---|---|---|---|---|---|---|
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&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 | Medical, Research | Pediatric | 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 | ||
English, Research | clinical, Drug Development | english research | clinical 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 | ||
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 | Website |
| English, Living with FSHD | Exercise | english living-with-fshd | exercise | ||
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 | |||
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 | 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. 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). | 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. | ||||||
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 | Book | Landmark report on FSHD’s disease burden and unmet medical need, submitted to the FDA in 2020. | 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) | 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 | |||||||
FSHD Advocate 2020 Issue 1 | Link | |||||||
FSHD Advocate 2019 Issue 3 | Link | |||||||
FSHD Society 2012 Atlanta Meeting | 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. | ||||||
FSHD Connect 2014 | 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. | ||||||
FSHD Connect 2016 | 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. | ||||||
FSHD Connect 2018 | 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. | ||||||
FSHD Society Public Service Announcements | 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. | ||||||
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. | ||||||
FSHD Society Living with FSHD | 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. | ||||||
FSHD Society Medical Seminars | 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. | ||||||
FSHD Society Research Seminars | 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. | ||||||
The Resource Finder at Kennedy Krieger Institute | Link | Please contact us to recommend more web resources. | ||||||
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 | 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 | |||||||
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 | Link | Waking up your muscles | ||||||
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 | Link | Useful professional publications to share with your doctor | ||||||
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 | LINK | Videos | ||||||
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 |