Patient Library

TitlenameLinkFile TypeDescriptionLibrary CategoriesLibrary Tagshf:tax:library_categoryhf:tax:library_tag
MUSCLE FATIGUE IN MUSCULAR DYSTROPHIES

Journal article

Link

Research study on the nature of fatigue in FSHD and other NMDs

English, Medical, ResearchFatigueenglish medical researchfatigue
¿Qué tratamientos hay?

Podcast

Link

Spanish-language podcast, “Treatments for FSHD?”

Research, SpanishClinical Trials, Drug Developmentresearch spanishclinical-trials drug-development
NutriciónPodcastPodcastNutrition considerations for people with FSHDSpanish, WellnessDiet and Nutritionspanish wellnessdiet-and-nutrition
2024 IRC Abstract BookPFDBrochureScientific abstracts from the 2024 International Research Congress on FSHDEnglish, ResearchBasic Research, Clinical Research, Clinical Trialsenglish researchbasic-research clinical-research clinical-trials
Pediatric neuromuscular careSlidesSlidesDr. Stephen Chrzanowski at UMass Chan Medical School on how care is structured for pediatric patientsEnglish, MedicalPediatricenglish medicalpediatric
El estrésPodcastLinkPodcast from FSHD SpainMental Health, Spanish, Wellnessmental-health spanish wellness
Dutch FSHD care guideline (English translation)PDFBrochureEvidence-based care guide focusing on pain, fatigue, exercise, communicationEnglish, Medical, WellnessCommunication, Exercise, Fatigue, Painenglish medical wellnesscommunication exercise fatigue pain
¿Qué es la FSHD?PodcastPodcastHablar sobre los diferentes tratamientosResearch, SpanishClinical Research, Drug Developmentresearch spanishclinical-research drug-development
Finding the care team you needPDFDocumentWomen on Wellness discussion notes on Medicare, Home health services, physiatrists, and keeping a sense of humor.English, Living with FSHD, Medical, WellnessInsurance, Physical Therapyenglish living-with-fshd medical wellnessinsurance physical-therapy
Big pharmas show growing interest in FSHDBlog postwebsiteLarge pharmaceutical companies are investing in small biotechs with FSHD therapeutic programsEnglish, ResearchDrug Developmentenglish researchdrug-development
Fighting for life insuranceBlog postwebsiteHoward Chabner's landmark case on discriminatory premium pricing based on his FSHD diagnosisEnglish, Living with FSHDDisability Rights, Insuranceenglish living-with-fshddisability-rights insurance
The American with Disabilities ActSlidesSlidesTalk by Marisa Spain on navigating the ADA in the real worldEnglish, Living with FSHDAdvocacy, Disability Rightsenglish living-with-fshdadvocacy disability-rights
Introduction to physical medicine and rehabilitationVideoVideosDr. Cristina Shea explains physiatry at the New England FSHD 360English, MedicalOccupational Therapy, Orthotics, Physical Therapyenglish medicaloccupational-therapy orthotics physical-therapy
Tarjeta de Alerta Médica FSHDDownloadBrochure
Traducción al español de la tarjeta de alerta médica de la Sociedad FSHD
Medical, SpanishBreathing Problemsmedical spanishbreathing-problems
Getting treatments to young patientsLinkLinkThe MOVE Pediatric study is essential for clinical trials for childrenEnglish, ResearchPediatricenglish researchpediatric
Why I exerciseLinkLinkFrank Hanley of Feeling Fit with FSHD on the many benefits of exerciseEnglish, Mental Health, WellnessExerciseenglish mental-health wellnessexercise
High-intensity exercise training in FSHDLinkwebsiteHigh-intensity training is safe and improves fitnessEnglish, Medical, WellnessExercise, Heart Healthenglish medical wellnessexercise heart-health
Access to healthcare for people with disabilitiesSlides (PDF)LinkTalk by Dr. Elizabeth Pendo, Univ. of WashingtonEnglish, Medical, WellnessDisability Rightsenglish medical wellnessdisability-rights
AVANCES EN EL CONOCIMIENTO DE LA DISTROFIA FACIO-ESCÁPULO-HUMERALPDFLinkGenetics of FSHD (Spanish), slides by Dr. Pili CamañoMedical, SpanishGenetic Counseling, Genetic Testingmedical spanishgenetic-counseling genetic-testing
Insurance coverage for costly rare-disease treatmentsSlide deck (PDF)BrochureGuidance from Little Hercules FdnEnglish, MedicalAdvocacy, Drug Development, Insuranceenglish medicaladvocacy drug-development insurance
FSHD and pregnancyPDFBrochureFrom Dr. Emma Ciafaloni, Univ. of RochesterEnglish, MedicalReproductive Health, Womenenglish medicalreproductive-health women
Monografia FSHDPDFBrochure
Folleto sobre FSHD
Medical, Spanishmedical spanish
Adjusting to a new environmentPDFBrochureTips for finding new care providers, adapting a new home, making new friendsEnglish, WellnessAdaptations, Social Supportenglish wellnessadaptations social-support
Getting treatments to young patientsBlog postwebsiteAbout the MOVE Peds studyEnglish, ResearchClinical Research, Clinical Trials, Pediatricenglish researchclinical-research clinical-trials pediatric
Products and devices for dental carePDFBrochureDentists with FSHD patients share tips for dental careEnglish, MedicalFacial Weaknessenglish medicalfacial-weakness
Changemaker: Archer SverdrupBlog postwebsiteArcher co-founded Everything Early OnsetEnglish, Living with FSHD, WellnessEarly Onset or Infatile, Social Supportenglish living-with-fshd wellnessearly-onset-or-infatile social-support
Working out with a personal trainerBlog postVideoA personal trainer helps improve strength and functionEnglish, Living with FSHD, WellnessExerciseenglish living-with-fshd wellnessexercise
The Advocate, 2024 Issue 3PDFPDFClinical Trial Readiness, notable FSHers, Society updates.English, Living with FSHDAdvocacy, Care Partner, Children, Clinical Research, Clinical Trials, Early Onset or Infatile, Families, Fundraising, Research Motivation, Walk and Roll, Women, Young Adultsenglish living-with-fshdadvocacy 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 adultsLinkBrochureHow to be prepared for emergencies and natural disasters if you have impaired mobility.English, Living with FSHDDisability Rights, Wheelchairsenglish living-with-fshddisability-rights wheelchairs
Aging in place – Tips for planning aheadBlog postwebsiteTips and resources for adapting your home for future disabilityEnglish, Living with FSHDAdaptations, Home Renovationenglish living-with-fshdadaptations home-renovation
English, Living with FSHD, Medical, WellnessCommunication, Hearing Lossenglish living-with-fshd medical wellnesscommunication hearing-loss
It's alive! It's alive!Blog postwebsiteRobotic spoon enables independence in feedingEnglish, Living with FSHD, WellnessDiet and Nutrition, Forearm and Hand Weaknessenglish living-with-fshd wellnessdiet-and-nutrition forearm-and-hand-weakness
Muscle loss with Ozempic® and similar drugsBlog postwebsiteRisk of muscle loss from taking GLP-1 agonistsEnglish, Medical, WellnessDiet and Nutrition, Medicationenglish medical wellnessdiet-and-nutrition medication
FSHD Advocate 2024, Issue 3PDFThis issue of the FSHD Advocate features innovations in FSHD research, treatments, and care.English, FSHD Society Information, Living with FSHD, Medical, Research, WellnessAdaptations, Alternative Therapies, Disability Rights, Drug Development, Insurance, Mobilityenglish fshd-society-information living-with-fshd medical research wellnessadaptations alternative-therapies disability-rights drug-development insurance mobility
The FSHD NavigatorBlog Post
The FSHD Navigator helps families with FSHD find what they need to live their best lives.
English, Living with FSHD, Medical, Research, WellnessNewly Diagnosed, Websiteenglish living-with-fshd medical research wellnessnewly-diagnosed website
The very model of a modern epigenetic diseaseBlog postwebsiteExplains epigenetics and its role in FSHD1 and 2English, ResearchGenetic Counseling, Genetic Testingenglish researchgenetic-counseling genetic-testing
English, WellnessDiet and Nutritionenglish wellnessdiet-and-nutrition
Ten things I wish someone had told me…Blog postwebsiteAdvice on planning for the challenges of FSHDEnglish, Living with FSHD, Mental Health, WellnessAdvocacy, Early Onset or Infatile, Mobility, Newly Diagnosed, Painenglish living-with-fshd mental-health wellnessadvocacy early-onset-or-infatile mobility newly-diagnosed pain
Braces for shoulder stabilizationBlog postWebsiteA patient explains how he uses shoulder braces to help stabilize his scapula.English, MedicalOrthotics, Shoulder Weaknessenglish medicalorthotics shoulder-weakness
Emergency considerations for FSHD patientsLinkWebsiteReviewed 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, MedicalBreathing Problemsenglish medicalbreathing-problems
Medic alert card (2024 version0DownloadLinkDownloadable PDF wallet card to print on cardstockEnglish, Living with FSHD, MedicalBreathing Problemsenglish living-with-fshd medicalbreathing-problems
Staying Active While at HomeBlog postWebsiteJulie Hershberg, DPT, demonstrates exercises to do at homeEnglish, Medical, WellnessExercise, Physical Therapyenglish medical wellnessexercise physical-therapy
Nerve mobility and pain, with Arielle LevyYoutubeVideo
Approaches to relieving pain caused by irritated nerves.
English, Medical, WellnessExercise, Pain, Videosenglish medical wellnessexercise pain videos
ACT to improve quality of lifeWebsiteWebsiteDr. Kent Drescher on acceptance & commitment therapyEnglish, Mental Health, WellnessAnxiety, Depressionenglish mental-health wellnessanxiety depression
Mental health challenges for children and teens with FSHDvideo    VideoDr. David Younger's personal journey and insights on coming to terms with FSHDEnglish, Mental Health, WellnessPediatric, Teens, Young Adultsenglish mental-health wellnesspediatric teens young-adults
Gene therapy for FSHD and what families can do to helpVideoVideoScott Harper on progress toward gene therapyEnglish, ResearchClinical Trials, Drug Development, Pediatricenglish researchclinical-trials drug-development pediatric
Pediatric FSHD natural history studiesVideoVideoCurrent research in the US and AustraliaEnglish, ResearchClinical Research, Pediatricenglish researchclinical-research pediatric
Speech and swallowing issues in children with FSHDVideoVideoHow to recognize and manage swallowing and speech problemsEnglish, Living with FSHD, MedicalCommunication, Facial Weakness, Pediatricenglish living-with-fshd medicalcommunication facial-weakness pediatric
Sharon Terry on genetic testing of children with FSHDVideoVideoThe case for early genetic diagnosisEnglish, Medical, ResearchClinical Research, Genetic Testing, Pediatricenglish medical researchclinical-research genetic-testing pediatric
Dr. Jeffrey Statland on research gaps in pediatric FSHDVideoVideoThe road to including children in FSHD clinical trialsEnglish, ResearchClinical Research, Clinical Trials, Pediatric, Teensenglish researchclinical-research clinical-trials pediatric teens
Accessible Driver’s License and Modified VehiclesVideoVideoFor people in wheelchairs who want to be able to drive themselvesEnglish, Living with FSHDTeens, Wheelchairs, Young Adultsenglish living-with-fshdteens wheelchairs young-adults
FSHD University: Family Communication with Dr. Jennifer Egert, Patients, and Family MembersVideoVideoWebinar with Dr. Jennifer Egert, Patients, and Family MembersEnglish, Living with FSHD, WellnessAnxiety, Depression, Newly Diagnosedenglish living-with-fshd wellnessanxiety depression newly-diagnosed
Living well with FSHD and thriving in difficult timesVideoVideoWebinar by Dr. Ora Prilleltensky, psychologist with FSHDEnglish, Mental Health, WellnessAnxiety, Counseling, Depressionenglish mental-health wellnessanxiety counseling depression
Scapular surgery for FSH muscular dystrophyvideoVideoWebinar by Anthony Romeo, expert on scapular surgeryEnglish, MedicalShoulder Weaknessenglish medicalshoulder-weakness
Q and A about FSH muscular dystrophy with Kathryn Wagner, MD PhDVideoVideoUseful overview by top expertEnglish, MedicalNewly Diagnosedenglish medicalnewly-diagnosed
The History of FSH muscular dystrophy in a large Utah kindredVideoVideoFascinating history of largest kindred of FSHDEnglish, ResearchGenetic Counselingenglish researchgenetic-counseling
Orthotics for Knee Hyperextension and Spine issues in FSHDVideoVideosWebinar by Bob Meier, certified orthotistEnglish, MedicalHip and Upper Leg Weakness, Lower Leg and Ankle Weakness, Orthoticsenglish medicalhip-and-upper-leg-weakness lower-leg-and-ankle-weakness orthotics
Early onset FSHD with Tina DuongVideoVideoFindings from natural history study of early-onset FSHDEnglish, Medical, ResearchPediatricenglish medical researchpediatric
Managing difficult emotions and experiences, with Dr. David YoungerVideoVideoA psychologist with FSHD on the power of mindfulness meditationEnglish, Living with FSHD, Mental Health, WellnessAnxiety, Depression, Lonlinessenglish living-with-fshd mental-health wellnessanxiety depression lonliness
The Job Talk with Lynn StevensVideoVideoLynn shares her journey with FSHD and expertise in job placement for people with disabilitiesEnglish, Living with FSHDAbleism, Disability Rights, Young Adultsenglish living-with-fshdableism disability-rights young-adults
Clinical Trials 101 with Dr Tahseen MozaffarVideoVideoWebinar on the basics of how clinical trials workEnglish, ResearchClinical Trials, Drug Developmentenglish researchclinical-trials drug-development
Dynamic sitting - exercising in a seated positionVideoVideoBy Nikia Stinson, DPT, from Kennedy Krieger InstituteEnglish, Living with FSHD, Medical, WellnessExercise, Hip and Upper Leg Weakness, Lower Leg and Ankle Weaknessenglish living-with-fshd medical wellnessexercise hip-and-upper-leg-weakness lower-leg-and-ankle-weakness
FSHD Sleep and pain study by Heloise HoffmannVideoVideoResults of survey study on sleep quality and sleep disordersEnglish, Living with FSHD, Medical, Mental Health, WellnessPain, Sleep Problemsenglish living-with-fshd medical mental-health wellnesspain sleep-problems
The Mattering Effect: How Feeling Valued and Adding Value Shape our LivesVideoVideo
Webinar by authors Isaac and Ora Prilleltensky
English, Living with FSHDDepression, Lonliness, Self Harmenglish living-with-fshddepression lonliness self-harm
English, Living with FSHDDepression, Lonliness, Self Harmenglish living-with-fshddepression lonliness self-harm
Reproductive genetic counseling and pregnancyVideoVideoGenetic testing of embryo, FSHD impact on pregnant womenEnglish, MedicalGenetic Counseling, Genetic Testing, Reproductive Health, Womenenglish medicalgenetic-counseling genetic-testing reproductive-health women
Orthotics for Knee HyperextensionVideoVideoOrthotist Bob Meier addresses FSHD knee issuesEnglish, MedicalHip and Upper Leg Weakness, Lower Leg and Ankle Weakness, Orthoticsenglish medicalhip-and-upper-leg-weakness lower-leg-and-ankle-weakness orthotics
Nutrition and FSHD with Matt BekeVideoVideoNutrition guidance from U Florida nutritionistEnglish, Living with FSHD, WellnessDiet and Nutritionenglish living-with-fshd wellnessdiet-and-nutrition
Shoulder dyskinesia in FSH muscular dystrophyVideoVideoFixing maladaptive movements to compensate for shoulder weaknessEnglish, Living with FSHD, MedicalExercise, Pain, Shoulder Weaknessenglish living-with-fshd medicalexercise pain shoulder-weakness
Managing pain in individuals with FSHDVideoVideoManaging chronic pain takes a multidisciplinary teamEnglish, Living with FSHD, MedicalAnxiety, Depression, Medication, Mindfulness, Painenglish living-with-fshd medicalanxiety depression medication mindfulness pain
Changing Our Mindset About Assistive TechnologiesVideoVideoEmma W see technology as tools for living her best lifeEnglish, Living with FSHDOrthotics, Wheelchairsenglish living-with-fshdorthotics wheelchairs
Resilience and FSHDVideoVideoKent Drescher, PhD, on psychotherapy that has proven benefit for FSHDEnglish, Living with FSHD, Mental Health, WellnessAnxiety, Counseling, Depressionenglish living-with-fshd mental-health wellnessanxiety counseling depression
Nutritional and exercise interventions for FSHDVideoVideoDr. Mark Tarnopolsky presents his research and treatment ideasEnglish, Living with FSHD, MedicalDiet and Nutrition, Exerciseenglish living-with-fshd medicaldiet-and-nutrition exercise
Bowel and Urinary issues in FSHDVideoVideoSurvey shows GI and urinary issues are common and merit further researchEnglish, MedicalGastrointestinal Problems, Urinary Problemsenglish medicalgastrointestinal-problems urinary-problems
Epic Bio’s FSHD ProgramVideoVideoThe first gene therapy for FSHD to reach a clinical trialEnglish, ResearchClinical Trials, Drug Developmentenglish researchclinical-trials drug-development
Dr. Bakri Elsheikh: What Every Newly Diagnosed Person Should KnowVideoVideoFSHD 101 for newly diagnosed peopleEnglish, MedicalNewly Diagnosedenglish medicalnewly-diagnosed
Physical Therapy for Shoulder Issues in Kids with Maaike PelsmaVideoVideoDutch expert discusses PT for children with FSHDEnglish, MedicalChildren, Physical Therapy, Shoulder Weaknessenglish medicalchildren physical-therapy shoulder-weakness
FSHD University Annual Drug UpdateVideoVideo
2023 webinar with Nicholas Johnson, MD
English, ResearchClinical Trials, Drug Developmentenglish researchclinical-trials drug-development
Treating FSHD: A Broader View with Nicol Voermans, MD PhD, and Nathaniël Rasing, MDVideoVideoTreat all aspects of FSHD to optimize your well-beingEnglish, Medical, WellnessBreathing Problems, Diet and Nutrition, Drug Development, Exercise, Fatigue, Pain, Social Supportenglish medical wellnessbreathing-problems diet-and-nutrition drug-development exercise fatigue pain social-support
Breathing with FSHDVideoVideoExcellent overview on breathing issues for people with neuromuscular diseaseEnglish, MedicalBreathing Problems, Sleep Problemsenglish medicalbreathing-problems sleep-problems
Exercise for hip flexors Part 2VideoVideoQi Gong-based exercises for hip flexorsEnglish, Living with FSHDExercise, Hip and Upper Leg Weaknessenglish living-with-fshdexercise hip-and-upper-leg-weakness
Pain management in FSHDBlog postKathy Mathews, MD, and colleagues at Univ of Iowa explain the pain management requires multiple approaches working togetherEnglish, Living with FSHD, MedicalPainenglish living-with-fshd medicalpain
A delicate matter for female travelers with FSHDBlog postWebsiteWomen on Wellness group on managing challenges with toilets, urinary and bowel accidentsEnglish, Living with FSHDAdaptations, Gastrointestinal Problems, Urinary Problemsenglish living-with-fshdadaptations gastrointestinal-problems urinary-problems
About ankle-foot orthoses (AFOs)Blog postWebsitePatient's overview of different types of ankle-foot orthoses (AFO)English, Living with FSHD, Media TypeFall Prevention, Lower Leg and Ankle Weakness, Orthoticsenglish living-with-fshd media-typefall-prevention lower-leg-and-ankle-weakness orthotics
Design to thriveBlog postWebsiteJane Nemke describes accessible design modifications to her homeEnglish, Living with FSHDAdaptationsenglish living-with-fshdadaptations
Changing mindset about assistive technologiesBlog postWebsiteAssistive technologies enable us to live our best livesEnglish, Living with FSHDAdaptations, Scooters, Wheelchairsenglish living-with-fshdadaptations scooters wheelchairs
My Superpower – Why I volunteer for clinical trialsBlog postWebsiteA patient's account of being in a clinical trial and how to prepareEnglish, ResearchClinical Trialsenglish researchclinical-trials
Transitioning to AdulthoodVideoVideo
Resources on helping children with FSHD transition to adulthood
English, Living with FSHDTeens, Young Adultsenglish living-with-fshdteens young-adults
Abdominal and breathing exercises for FSHDBlog postWebsiteFrank Hanley's Qi Gong exercises for breathing and core strengthEnglish, Living with FSHDBreathing Problems, Core Weakness, Exerciseenglish living-with-fshdbreathing-problems core-weakness exercise
International research round-upBlog postWebsiteSummary of research from 2022 International Research CongressEnglish, ResearchBasic Research, Clinical Researchenglish researchbasic-research clinical-research
Bowel and urinary issues in FSHDBlog postWebsiteUniversity of Iowa survey study finds higher prevalance of bowel and urinary issuesEnglish, MedicalGastrointestinal Problems, Urinary Problemsenglish medicalgastrointestinal-problems urinary-problems
Feeling Fit: Exercises for the neck and shouldersBlog Post
Frank Hanley shares Qi Gong-base exercises for neck and shoulders.		English, Living with FSHDExerciseenglish living-with-fshdexercise
Feeling Fit with low-impact seated exercisesBlog postWebsiteVideo and a music playlist for exercisingEnglish, Living with FSHDExerciseenglish living-with-fshdexercise
Stay warm and safeBlog postWebsiteWhy cold temperatures are hard. Tips for keeping warm.English, Living with FSHDAdaptationsenglish living-with-fshdadaptations
(Cautious) optimism in FSHD drug developmentBlog postWebsitePatients play a critical roleEnglish, ResearchDrug Developmentenglish researchdrug-development
Feeling Fit with Lonwabo NeneBlog postWebsiteExercises that have helped this FSHD patientEnglish, WellnessExerciseenglish wellnessexercise
How postural changes lead to painBlog postWebsitePhysiotherapist Ulrike Uta explains how muscle weakness from FSHD can cause people to compensate by overworking other musclesEnglish, Living with FSHD, Medical, WellnessCore Weakness, Exercise, Fatigue, Painenglish living-with-fshd medical wellnesscore-weakness exercise fatigue pain
About early-onset FSHDBlog postWebsiteDr. Tina Duong reviews natural history data on early-onset FSHDEnglish, Medical, ResearchClinical Research, Pediatricenglish medical researchclinical-research pediatric
Feeling Fit: Exercising your hands and armsBlog postWebsiteQi Gong teacher Frank Hanley leads exercises for hands and armsEnglish, Living with FSHDForearm and Hand Weaknessenglish living-with-fshdforearm-and-hand-weakness
Your practical guide to clinical trialsBlog postWebsiteClinical trial process and terminology explainedEnglish, ResearchClinical Trialsenglish researchclinical-trials
What to do in a crisisBlog postWebsiteResources for coping with depression, anxiety, self harm, suicidal thoughtsEnglish, Mental Health, WellnessAnxiety, Depression, Self Harmenglish mental-health wellnessanxiety depression self-harm
New frontiers in muscle regeneration for FSHDBlog postWebsiteMore companies are looking at strategies to regrow musclesEnglish, ResearchClinical Research, Drug Developmentenglish researchclinical-research drug-development
Raising our voice to raise our seats!Blog postWebsiteElevating wheelchair seats are essential for safety and daily tasks. Medicare will now cover the costEnglish, Living with FSHD, Medical, WellnessInsurance, Wheelchairsenglish living-with-fshd medical wellnessinsurance wheelchairs
Managing FatigueBlog postWebsiteTips and tricks from patients on managing and reducing fatigueEnglish, WellnessFatigueenglish wellnessfatigue
Adventures with a robotic leg braceBlog postWebsiteThe C-brace is helping a patient to walk again.English, Living with FSHD, MedicalHip and Upper Leg Weakness, Orthoticsenglish living-with-fshd medicalhip-and-upper-leg-weakness orthotics
New global coalition to speed delivery of therapies for FSHDBlog postWebsiteProject Mercury aims to speed clinical trials and advocate for access to new treatmentsEnglish, FSHD Society InformationClinical Research, Press Releasesenglish fshd-society-informationclinical-research press-releases
Walkers and Wheelchairs 101Blog postWebsiteDifferent types of wheelchairs and how to choose the right deviceEnglish, Living with FSHD, MedicalMobility, Wheelchairsenglish living-with-fshd medicalmobility wheelchairs
Falling backwards and what to do about itBlog postWebsiteTips and tricks to prevent falling backwardEnglish, Living with FSHD, MedicalFall Prevention, Hip and Upper Leg Weakness, Lower Leg and Ankle Weaknessenglish living-with-fshd medicalfall-prevention hip-and-upper-leg-weakness lower-leg-and-ankle-weakness
Making strides toward stem cell therapiesBlog postWebsiteStem cell-based treatments for muscular dystrophy are advancing in the lab of Rita Perligeiro at the University of MinnesotaEnglish, ResearchBasic Research, Drug Developmentenglish researchbasic-research drug-development
Eye Care Tips and Tricks for FSHDBlog postWebsiteTips & tricks for keeping eyes comfortable and healthyEnglish, MedicalDry Eyesenglish medicaldry-eyes
An ounce of prevention…Blog postWebsiteFalls are a leading cause of serious injury and death. Here are tips on preventing falls.English, Living with FSHD, MedicalFall Prevention, Hip and Upper Leg Weakness, Lower Leg and Ankle Weaknessenglish living-with-fshd medicalfall-prevention hip-and-upper-leg-weakness lower-leg-and-ankle-weakness
Fall vaccine guideBlog postWebsiteA clear and concise guide to recommended vaccines (2023).English, MedicalBreathing Problems, Lung Health, Medicationenglish medicalbreathing-problems lung-health medication
Holistic approaches to fitness and wellbeingBlog postWebsiteRita Lynn follows a holistic approach to fitness and well-being that integrates psychology, diet, meditation, and breathing.English, WellnessDiet and Nutrition, Exercise, Meditationenglish wellnessdiet-and-nutrition exercise meditation
When I finally discovered the benefits of support groupsBlog postWebsiteOne man's journey to discovering the benefits of connecting with others with FSHD.English, Mental Health, WellnessSocial Supportenglish mental-health wellnesssocial-support
Orphan drug designation for Epic Bio’s FSHD candidateBlog postWebsiteWhat an orphan drug designation for Epic Bio's drug means.English, ResearchDrug Developmentenglish researchdrug-development
A holistic approachBlog postWebsiteThe 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, ResearchAdvocacy, Basic Research, Clinical Research, Clinical Trialsenglish fshd-society-information living-with-fshd medical mental-health researchadvocacy basic-research clinical-research clinical-trials
2023 International Research Congress summaryBlog postWebsiteHighlights from the 2023 IRC meeting.English, ResearchBasic Research, Clinical Researchenglish researchbasic-research clinical-research
Kitchen ConfidentialBlog postWebsiteTips and tricks to make kitchen and cooking tasks easier.English, Living with FSHD, WellnessDiet and Nutrition, Home Renovationenglish living-with-fshd wellnessdiet-and-nutrition home-renovation
Treatments for FSHD: A broader viewBlog postWebsiteDr. Nicol Voermans' holistic approach to patients' well-being.English, Medical, Wellnessenglish medical wellness
Clinical care vs. clinical researchBlog postWebsiteExplains the difference between research and medical care.English, Medical, ResearchClinical Research, Clinical Trialsenglish medical researchclinical-research clinical-trials
Engineering new musclesBlog postWebsiteEngineering a scaffold allowing muscle stem cells to rebuild injured muscles.English, ResearchBasic Research, Clinical Researchenglish researchbasic-research clinical-research
Shaking Qigong to relax your bodyBlog postWebsiteShaking Qi Gong opens up our joints or energy gates and meridians allowing the free flow of Qi (energy) in our body.English, WellnessExerciseenglish wellnessexercise
The children of FSHD – they exist, tooBlog postWebsiteTrial readiness for pediatric and early-onset FSHD.English, ResearchChildren, Drug Development, Early Onset or Infatileenglish researchchildren drug-development early-onset-or-infatile
FSHD advocate in film about Apple Personal VoiceBlog postWebsiteEnglish, MedicalCommunication, Videosenglish medicalcommunication videos
Women’s health with Dr. Loralei ThornbergBlog postWebsiteEnglish, MedicalVideos, Womenenglish medicalvideos women
Vita Therapeutics’ cell-based therapy updateBlog PostBlogNews and video updates about the company's strategy to create stems cells which evade the immune system.English, ResearchDrug Developmentenglish researchdrug-development
Statins (cholesterol-lowering drugs) and muscular dystrophyBlog postWebsiteA very helpful article on the risks and benefits of taking statins (cholesterol-lowering drugs).English, MedicalHeart Health, Medicationenglish medicalheart-health medication
Every person’s effort takes us closer to the tipping pointBlog postWebsiteFrom our 2024 Volunteer Leadership Summit, chapter and Walk & Roll leaders talk about the transformative impact of working together.English, Living with FSHDAdvocacy, Social Supportenglish living-with-fshdadvocacy social-support
FSHD Representation in Film Fest Favorite ‘Good Bad Things’Blog postWebsiteA film by a screenwriter and actor with FSHD is taking top prizes on the film festival circuit.English, Living with FSHDAbleismenglish living-with-fshdableism
Understanding your FSHDBlog postLinkLonwabo Nene says being able to describe accurately how FSHD affects your body is key to taking charge of your health.English, WellnessExerciseenglish wellnessexercise
Yoga adapted for FSHDFSHD YogaBrochureFeeling Fit with FSHD handout by Rita Lynn on adaptive yoga.English, WellnessExercise, Meditationenglish wellnessexercise meditation
FSHD Advocate 2024, Issue 1FSHD Advocate 2024, Issue 1PDFTaking 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, WellnessAdvocacy, Clinical Research, Magazineenglish fshd-society-information living-with-fshd wellnessadvocacy clinical-research magazine
FSHD Advocate 2023 Issue 3FSHD Advocate 2023 Issue 3LinkThis 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 FSHDAbleism, Adaptationsenglish fshd-society-information living-with-fshdableism adaptations
FSHD Advocate 2023 Issue 2FSHD Advocate 2023 Issue 2LinkThis 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, Researchenglish fshd-society-information living-with-fshd medical research
FSHD Advocate 2023 Issue 1FSHD Advocate 2023 Issue 1LinkEnglish, FSHD Society Information, Living with FSHD, Medical, Researchenglish fshd-society-information living-with-fshd medical research
Understanding and Navigating MedicareGlobal Genes_Understanding-Navigating-MedicarePDFExcellent guide from Global Genes for people with long-term disability on how to navigate Medicare coverage.English, Living with FSHD, MedicalDisability Benefits, Insuranceenglish living-with-fshd medicaldisability-benefits insurance
Physical therapy for shoulder dyskinesia in FSHDDownloadPDFSlides from 2022 FSHD Connect plenary talk by Jos IJspeert.English, MedicalExercise, Pain, Physical Therapy, Shoulder Weaknessenglish medicalexercise pain physical-therapy shoulder-weakness
FSHD Advocate 2022 Issue 3FSHD Advocate 2022 Issue 3LinkPreparing for clinical trials in FSHD.English, FSHD Society Information, Living with FSHD, Medical, Researchenglish fshd-society-information living-with-fshd medical research
Ficha técnica FSHDPDFBrochureFolleto sobre la distrofia muscular FSHMedical, SpanishNewly Diagnosedmedical spanishnewly-diagnosed
Apoyo psicosocial para familias con hijos recién diagnosticadosPDFBrochureEsta guía psicosocial para familias con hijos/as recién diagnosticados de Enfermedad Neuromuscular (ENM)Mental Health, Spanish, WellnessFamilies, Newly Diagnosedmental-health spanish wellnessfamilies newly-diagnosed
Fisioterapia en la FSHDPDFBrochureFolleto de la fundación holandesa FSHD sobre fisioterapiaLiving with FSHD, Medical, SpanishExercise, Physical Therapyliving-with-fshd medical spanishexercise physical-therapy
Terapia físicaPDFBrochureFolleto de la FSHD Society sobre fisioterapiaLiving with FSHD, Medical, SpanishPhysical Therapyliving-with-fshd medical spanishphysical-therapy
El dolor en la FSHDwebsitewebsiteDamos a conocer un estudio que analiza el dolor en FSHDLiving with FSHD, Medical, SpanishPainliving-with-fshd medical spanishpain
Manifestaciones extramusculares en FSHDwebsitewebsiteFSHD manifestarse en otros órganos del cuerpoMedical, SpanishBone Health, Breathing Problems, Coat's Disease, Fatigue, Hearing Loss, Heart Health, Pain, Sleep Problemsmedical spanishbone-health breathing-problems coats-disease fatigue hearing-loss heart-health pain sleep-problems
Anticipación genética en FSHDwebsitewebsiteUna revisión de la literatura sobre la anticipación genética en FSHD.Medical, Research, SpanishGenetic Counseling, Genetic Testingmedical research spanishgenetic-counseling genetic-testing
Tratamiento génico en FSHDwebsitewebsiteTratamiento génico en FSHDResearch, SpanishDrug Developmentresearch spanishdrug-development
Empresas biomédicas investigadoras de tratamientos FSHDWebsitewebsiteEmpresas biomédicas investigadoras de tratamientos FSHDResearch, SpanishDrug Developmentresearch spanishdrug-development
Estimulación eléctrica muscularwebsitewebsiteInformación básica de FSHD EspañaMedical, SpanishPhysical Therapymedical spanishphysical-therapy
FSHD Advocate 2022 Issue 2FSHD Advocate 2022 Issue 2LinkFocus on 2022 international research congress, FSHD ConnectEnglish, ResearchClinical Research, Clinical Trialsenglish researchclinical-research clinical-trials
FSHD Advocate 2022 Issue 1FSHD Advocate 2022 Issue 1LinkIgniting the fire within: What motivates people to get involvedEnglishClinical Trials, Research Motivationenglishclinical-trials research-motivation
FSHD Advocate 2021 Issue 3FSHD Advocate 2021 Issue 3LinkHow the Society has an outsized impact on research and trial readinessEnglish, ResearchBasic Research, Clinical Researchenglish researchbasic-research clinical-research
FSHD Advocate 2021 Issue 2FSHD Advocate 2021 Issue 2LINKEnglish, Living with FSHD, Mental HealthClinical Research, Early Onset or Infatile, Mobility, Wheelchairsenglish living-with-fshd mental-healthclinical-research early-onset-or-infatile mobility wheelchairs
Notes of spinal and scapular surgeryNotes on spinal and scapular surgeryPDFSurgeons Robert K. Lark and E.W. Hubbard write on when surgery might be indicated for spinal deformities in individuals with FSHD.English, MedicalCore Weakness, Spine Problemsenglish medicalcore-weakness spine-problems
FSHD Advocate 2021 Issue 1FSHD Advocate 2021 Issue 1Activate! Research, community, and selfEnglish, FSHD Society Information, Living with FSHD, Mental HealthAdvocacyenglish fshd-society-information living-with-fshd mental-healthadvocacy
FSHD Advocate 2020 Issue 3FSHD Advocate 2020 Issue 3LINKKeeping our focus on treatments and a cureEnglish, Living with FSHD, Mental Health, ResearchClinical Trials, Orthoticsenglish living-with-fshd mental-health researchclinical-trials orthotics
Voice of the Patient ReportDownloadBookLandmark report on FSHD's disease burden and unmet medical need, submitted to the FDA in 2020.English, Living with FSHD, ResearchAdvocacy, Clinical Research, Clinical Trialsenglish living-with-fshd researchadvocacy clinical-research clinical-trials
Industry Collaborative for Therapy Development in FSHDDownloadPDFWhite paper of 2019 Industry Collaborative meeting summarizes gaps in trial readiness for biomarkers, imaging, trial outcomes, and natural history.English, FSHD Society Information, ResearchClinical Trials, Drug Developmentenglish fshd-society-information researchclinical-trials drug-development
100 Questions and Answers About Muscular Dystrophy (First Edition, 2020)LinkLinkBy 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 HealthBone Health, Books, Breathing Problems, Diet and Nutrition, Drug Development, Exercise, Heart Health, Orthotics, Shoulder Weakness, Social Support, Wheelchairsenglish medical mental-healthbone-health books breathing-problems diet-and-nutrition drug-development exercise heart-health orthotics shoulder-weakness social-support wheelchairs
FSHD Advocate 2020 Issue 2FSHD Advocate 2020 Issue 2LinkHow we quickly adapted to the COVID pandemic lockdownEnglish, Living with FSHD, Mental Healthenglish living-with-fshd mental-health
FSHD Advocate 2020 Issue 1FSHD Advocate 2020 Issue 1LinkEverything you ever wanted to know about the path to clinical trialsEnglish, Medical, ResearchClinical Research, Clinical Trialsenglish medical researchclinical-research clinical-trials
FSHD Advocate 2019 Issue 32019 FSHD Advocate Issue 3LinkHow advocacy transforms livesEnglish, Living with FSHDAdvocacyenglish living-with-fshdadvocacy
FSHD Society 2012 Atlanta MeetingLinkLink | YouTubeVideo from the FSH Society's 2012 patient education conference in Atlanta.English, Living with FSHD, Medical, Researchenglish living-with-fshd medical research
FSHD Connect 2014LinkLink | YouTubeVideo from the FSH Society's 2014 patient education conference. Facial surgery, nutrition, exercise were among the topics.English, Living with FSHD, Medical, ResearchDiet and Nutrition, Facial Weaknessenglish living-with-fshd medical researchdiet-and-nutrition facial-weakness
FSHD Connect 2016LinkLink | YouTubeVideos from the FSH Society's 2016 Connect conference in Boston.English, Living with FSHD, Medical, Researchenglish living-with-fshd medical research
FSHD Connect 2018LinkLink | YouTubeFrom the FSH Society's 2018 Connect conference in Las Vegas.English, Living with FSHD, Medical, Researchenglish living-with-fshd medical research
FSHD Society Public Service AnnouncementsLinkLink | YouTubeOur playlist of videos to raise public awareness of FSHD.English, FSHD Society Information, Living with FSHDenglish fshd-society-information living-with-fshd
FSHD Society EventsLinkLink | YouTubeWelcome 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.Englishenglish
FSHD Society Living with FSHDLinkLink | YouTubeOur YouTube playlist of videos about living with FSHD.English, Living with FSHDenglish living-with-fshd
FSHD Society Medical SeminarsLinkLink | YouTubeOur YouTube playlist of videos about medical management of FSHD.English, Medicalenglish medical
FSHD Society Research SeminarsLinkLink | YouTubeOur YouTube playlist of talks about FSHD research.English, ResearchBasic Research, Clinical Researchenglish researchbasic-research clinical-research
The Resource Finder at Kennedy Krieger InstituteLinkLinkFor patients and families from world-leading muscular dystrophy institute.English, Living with FSHDenglish living-with-fshd
FSH Society Radio Show Live-15 with guests Beth Johnston and Leigh ReynoldsPodcast | Audio | mp3Englishenglish
FSH Society Radio Show Live - 16 guest Kristin DuquettePodcast | Audio | mp3Englishenglish
FSH Society Radio Show Live-17 guest Taylor QuiggPodcast | Audio | mp3Englishenglish
FSH Society Radio Show live-18 guest Skylar ConoverPodcast | Audio | mp3Englishenglish
FSH Society Radio Show live-19 guest Amanda RickardPodcast | Audio | mp3Amanda Rickard describes research on FSHD.English, ResearchBasic Research, Drug Development, Podcastenglish researchbasic-research drug-development podcast
FSH Society Radio Show Live-20 Guest June KinoshitaPodcast | Audio | mp3Englishenglish
FSH Society webinar with Dr Rabi TawilLinkLinkTalk by leading FSHD neurologist on best care practices.English, Medicalenglish medical
Facial surgery methods for Facioscapulohumeral Muscular DystrophyLinkLinkFSH 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, MedicalFacial Weaknessenglish medicalfacial-weakness
Dr. Anthony Romeo describes scapularthoracic fusion surgery for FSHDLinkLinkIn this video, Dr. Romeo introduces facioscapulohumeral muscular dystrophy (FHSD) and discusses the surgical procedure of scapulothoracic fusion.English, MedicalBack Weakness, Scapular Winging, Shoulder Weaknessenglish medicalback-weakness scapular-winging shoulder-weakness
Introduction to yoga for people with FSHDLinkLinkInstructor 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, WellnessExercise, Videosenglish living-with-fshd wellnessexercise videos
FSH Society Michigan MeetingLinkLinkExercises to wake up your musclesEnglish, Living with FSHD, WellnessExerciseenglish living-with-fshd wellnessexercise
Muscle Activation Exercises with Lynnette Rasmussen FSH SocietyLinkLinkExercises tailored for an FSHD patientEnglish, Living with FSHDExerciseenglish living-with-fshdexercise
Our YouTube channel has dozens of educational videosLinkLinkOur YouTube playlist of exercise and fitness for FSHDEnglish, Living with FSHD, WellnessExerciseenglish living-with-fshd wellnessexercise
Dealing with Physical Decline from Muscular Dystrophy, by Don NemkeDownloadPDFDetailed ideas for home renovation and accessiblity by Don NemkeEnglish, Living with FSHDAdaptations, Home Renovationenglish living-with-fshdadaptations home-renovation
A Guide for SchoolsDownloadPDFTo give to your child's schools. How to advocate for your childEnglish, Living with FSHD, WellnessAdaptations, Occupational Therapy, Pediatricenglish living-with-fshd wellnessadaptations occupational-therapy pediatric
FSHD and Social Support: A Guide for Friends and FamilyDownloadPDFHow to communicate effectively about what you needEnglish, Living with FSHD, Mental Health, WellnessSocial Supportenglish living-with-fshd mental-health wellnesssocial-support
You Are Not Alone. A Guide for the Newly DiagnosedDownloadPDFAdvice from people reflecting on their feelings and experiences when they were first diagnosed.English, Living with FSHD, Mental HealthCare Partner, Newly Diagnosedenglish living-with-fshd mental-healthcare-partner newly-diagnosed
171st ENMC International Workshop- Standards of care and management of FSHDDownloadPDF2010 standards of care from the European Neuromuscular CenterEnglish, Medicalenglish medical
Evidence-based FSHD care guideline AAN tools and materialsLinkLinkEnglish, Medicalenglish medical
Evidence-based FSHD care guideline – Summary for patients & familiesLinkLinkPatient-friendly summary of 2015 standard of care for FSHDEnglish, Medicalenglish medical
Evidence-based FSHD care guideline – Summary for cliniciansLinkLinkSummary of 2015 care guideline to share with your doctorEnglish, Medicalenglish medical
Medical Equipment: Access Solutions and Respiratory Therapy by Howard ChabnerDownloadPDFGuidance from lawyer and patient advocate Howard ChabnerEnglish, MedicalBreathing Problems, Insuranceenglish medicalbreathing-problems insurance
Early-onset (infantile) FSHD Fact SheetDownloadPDFOne page flyer with facts about early-onset FSHDEnglish, MedicalEarly Onset or Infatileenglish medicalearly-onset-or-infatile
FSHD Fact SheetDownloadPDFOne page flyer you can print out to give to others. Handy for fundraisers.English, Living with FSHDenglish living-with-fshd
An Overview of Anesthetic Concerns by Raymond HumlDownloadPDFReview of medical literature on anesthesia for neuromuscular patientsEnglish, MedicalAnesthesiaenglish medicalanesthesia
Guidelines for Physical Therapists Treating Clients with Neuromuscular DisordersDownloadPDFMedicare and maintenance physical therapy. Know your rights.English, MedicalExercise, Insurance, Physical Therapyenglish medicalexercise insurance physical-therapy
Letter Requesting Insurance Coverage for Genetic Testing (Word Doc Templates)DownloadDOC | DOCXIf insurance denies your genetic testing claim, here's how to contest itEnglish, MedicalGenetic Testing, Insuranceenglish medicalgenetic-testing insurance
Evidence-based FSHD Care Guideline + Online ResourcesDownloadPDFPamphlet summarizing 2015 care guideline for FSHDEnglish, Medicalenglish medical
Resources for FSHD patients & familiesDownloadPDFEnglishenglish
Physical Therapy for FSHD brochure (in Chinese)Physical Therapy for FSHD brochure (in Chinese)PDFEnglish, MandarinPhysical Therapyenglish mandarinphysical-therapy
FSH Society Medical Alert cardDownloadPDFEnglishenglish
About FSHD (in Spanish; in Chinese)About FSHD (in Spanish; in Chinese)PDFDownloadable overview of FSHD for people living with the conditionEnglish, Living with FSHD, Mandarin, Medical, Spanishenglish living-with-fshd mandarin medical spanish
FSH Watch: Vol. 6, No. 1, Fall 1999DownloadPDFThe FSH Society's newsletter. Research and advocacy focus.English, Researchenglish research
FSH Watch: Vol. 7, No. 1, Spring 2001DownloadPDFFSH Society's newsletter. Research and government policy.Englishenglish
FSH Watch: Vol. 8, No. 1, Winter 2003DownloadPDFEnglishenglish
FSH Watch: Vol. 8, No. 2, Spring 2003DownloadPDFEnglishenglish
FSH Watch Newsletter Summer 2005: Vol 10, No. 1.DownloadPDF48 pages (PDF)Englishenglish
FSH Watch Newsletter Summer 2007DownloadPDF52 pages (PDF)Englishenglish
FSH Watch Newsletter Fall 2007DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Winter 2008DownloadPDF16 pages (PDF)Englishenglish
FSH Watch Newsletter Spring 2008DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Summer 2008 Research IssueDownloadPDF24 pages (PDF)Englishenglish
FSH Watch Newsletter FSHD Wellstone MD CRCDownloadPDF2 pages (PDF)Englishenglish
FSH Watch Newsletter Fall 2008DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Winter 2009DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Spring 2009DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Summer 2009 Research IssueDownloadPDF28 pages (PDF)Englishenglish
FSH Watch Newsletter Fall 2009DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Winter 2010DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Spring 2010DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Summer Fall Research 2010DownloadPDF24 pages (PDF)Englishenglish
FSH Watch Newsletter Winter 2011DownloadPDF16 pages (PDF)Englishenglish
FSH Watch Newsletter Spring 2011DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Summer 2011 Research IssueDownloadPDF28 pages (PDF)Englishenglish
FSH Watch Newsletter Fall 2011DownloadPDF12 pages (PDF)Englishenglish
FSH Watch Newsletter Winter 2012DownloadPDF16 pages (PDF)English, FSHD Society Informationenglish fshd-society-information
FSH Watch Newsletter Summer Fall 2012DownloadPDFThe FSH Society's newsletter. 20 pages (PDF) on research, advocacy, community profilesEnglish, Living with FSHD, Medical, Researchenglish living-with-fshd medical research
FSH Watch Newsletter Winter 2013DownloadPDF28 pages (PDF)Englishenglish
FSH Watch Newsletter Spring 2013DownloadPDF20 pages (PDF)Englishenglish
FSH Watch Newsletter Summer Fall 2013 Annual Research IssueDownloadPDF32 pages (PDF)Englishenglish
FSH Watch Newsletter Winter 2014DownloadPDF28 pages (PDF)Englishenglish
FSH Watch Newsletter Spring 2014DownloadPDF20 pages (PDF)Englishenglish
FSH Watch Newsletter Summer Fall 2014 Annual Research IssueDownloadPDF24 pages (PDF)Englishenglish
FSH Watch Newsletter Winter 2015DownloadPDF24 pages (PDF)Englishenglish
FSH Watch Newsletter Spring/Summer 2015DownloadPDF28 pages (PDF)Englishenglish
FSH Watch Newsletter Fall 2015DownloadPDFEnglishenglish
FSH Watch 2016 Issue 1DownloadPDFEnglishenglish
FSH Watch 2016 Issue 2DownloadPDFEnglishenglish
FSH Watch 2016 Issue 3DownloadPDFEnglishenglish
FSH Watch 2017 Issue 1DownloadPDFEnglishenglish
FSH Watch 2017 Issue 2DownloadPDFEnglishenglish
FSH Watch 2017 Issue 3DownloadPDFEnglishenglish
FSH Watch 2018 Issue 1DownloadPDFEnglishenglish
FSH Watch 2018 – Issue 2DownloadPDFEnglishenglish
Consent Form for Participation in a Neuromuscular Research StudyDownloadPDFEnglishenglish
Muscle Surgery and Blood Samples from Patients with FSHDDownloadPDFEnglishenglish
May 2012: A Long ncRNA Links Copy Number Variation to a Polycomb/Trithorax Epigenetic Switch in FSHD Muscular DystrophyLinkLINKEnglishenglish
July 2012: FSHD Family Studies of DUX4 ExpressionDownloadPDFEnglishenglish
Sept 2014: FSH Society helps researchers develop an inducible DUX4 mouse modelLinkLINKEnglishenglish
Orphanet Report Series: Prevalence of Rare DiseasesDownloadPDFEnglishenglish
2012 FSH Society patient conference, AtlantaLinkLINKVideosEnglishenglish
FSH Society Fundraising WorkshopDownloadPDFEnglishenglish
FSHDselfies CampaignDownloadPDFEnglishenglish
Progress Towards Clinical TrialsDownloadPDF2014 FSHD Patient Connect conference presentation by Kathryn WagnerEnglishenglish
Consensus model for FSHD identifies opportunities for therapyDownloadPDF2014 FSHD Patient Connect conference presentation by Stepehn TapscottEnglish, Researchenglish research
Unlocking the Clinical Trial ToolboxDownloadPDF2014 FSHD Patient Connect conference presentation by Jefferey StatlandEnglishenglish
FSHD & NutritionDownloadPDF2014 FSHD Patient Connect conference presentation by Sabrina SacconiEnglish, Living with FSHDDiet and Nutritionenglish living-with-fshddiet-and-nutrition
Update on PT and ExerciseDownloadPDF2014 FSHD Patient Connect conference presentation by Shree PandyaEnglish, Medical, WellnessExercise, Physical Therapyenglish medical wellnessexercise physical-therapy
Modeling FSHD in zebrafishDownloadPDF2014 FSHD Patient Connect conference presentation by Louis KunkelEnglish, Researchenglish research
Genetically Similar Epigenetically DifferentDownloadPDF2014 FSHD Patient Connect conference presentation by Peter JonesEnglish, Researchenglish research
Natural History StudiesDownloadPDF2014 FSHD Patient Connect conference presentation by Ray HumlEnglishenglish
Multicenter infantile onset FSHD studyDownloadPDF2014 FSHD Patient Connect conference presentation by Yi-Wen ChenEnglish, ResearchEarly Onset or Infatileenglish researchearly-onset-or-infatile
#FSHDselfiesDownloadPDFEnglishenglish
FSH Society FY2017 Written Testimony before the US House Appropriations Committee on NIH Research, April 16, 2016DownloadPDFEnglishenglish
FSH Society FY2017 Written Testimony before the US Senate Appropriations Committee on NIH Research, April 16, 2016DownloadPDFEnglishenglish
April 2015 Testimony Submitted to the US House Appropriations CommitteeDownloadPDFEnglishenglish
March 2015 Testimony Submitted to U.S. Senate Appropriations SubcommitteeDownloadPDFEnglishenglish
May 2014 Testimony Submitted to U.S. Senate Appropriations SubcommitteeDownloadPDFEnglishenglish
March 2014 Testimony Submitted to U.S. House Appropriations SubcommitteeDownloadPDFEnglishenglish
May 2013 Testimony Submitted to U.S. Senate Appropriations SubcommitteeDownloadPDFEnglishenglish
March 2013 Testimony Submitted to U.S. House Appropriations CommitteeDownloadPDFEnglishenglish
April 2012 Testimony Submitted to US Senate Appropriations SubcommitteeDownloadPDFEnglishenglish
March 2012 Testimony Submitted to US Senate Appropriations SubcommitteeDownloadPDFEnglishenglish
April 2011 Testimony Submitted to US Senate Appropriates SubcommitteeDownloadPDFEnglishenglish
April 2010 Testimony Submitted to US Senate Appropriations SubcommitteeDownloadPDFEnglishenglish
April 2010 Testimony Submitted to US House of Representatives Appropriations SubcommitteeDownloadPDFEnglishenglish
May 2009 Testimony Submitted to US Senate Appropriations SubcommitteeDownloadPDFEnglishenglish
April 2008 Testimony Submitted to US Senate Appropriations SubcommitteeDownloadPDFEnglishenglish
March 2008 Testimony Submitted to US House of Representatives Appropriations SubcommitteeDownloadPDFEnglishenglish
March 2007 Testimony Submitted to Subcommittee on Labor, Health and Human ServicesDownloadPDFEnglishenglish
March 2007 Testimony Submitted to US House of Representatives Appropriations SubcommitteeDownloadPDFEnglishenglish
March 2007 Testimony Submitted to US Senate Appropriations SubcommitteeDownloadPDFEnglishenglish
Honoring the Memory of Stephen Jacobsen, Karen Johnsen and William MichaelDownloadPDFEnglishenglish
Summary of 2013DownloadPDFEnglishenglish
Map of the FSHD-linked GenesDownloadPDFEnglishenglish
Scapular Fixation SurgeryDownloadPDFDr. Leigh Ann Curl slide presentationEnglish, MedicalScapular Wingingenglish medicalscapular-winging
Breathing Health in FSHDDownloadPDFJoshua Benditt, MD, slides from 2012 patient conferenceEnglish, MedicalBreathing Problems, Sleep Problemsenglish medicalbreathing-problems sleep-problems
FSHD and Exercise (2014) by Julie Hershberg, PTDownloadPDFby Julie Hershberg, PT (2014)English, Living with FSHD, MedicalExercise, Physical Therapyenglish living-with-fshd medicalexercise physical-therapy
Physical Activity and Exercise in FSHD (2012) by Craig McDonald, MDDownloadPDFBy Craig McDonald, MD (2012)Englishenglish
Best Practice Guidelines on Genetic Diagnostics of FSHDDownloadPDFEnglishenglish
The decision to stop workingDownloadPDFA guide by Howard ChabnerEnglish, Living with FSHDenglish living-with-fshd
Resource list for finding information and helpDownloadPDFby Bill MacleanEnglishenglish
Resource list for Navigating Intimate RelationshipsDownloadPDFby Hilary MichaelsEnglishenglish
Managing FSHD: One Patient’s PerspectiveDownloadPDFA detailed, accessible guide by Howard ChabnerEnglish, Living with FSHD, WellnessBreathing Problems, Wheelchairsenglish living-with-fshd wellnessbreathing-problems wheelchairs
171st ENMC International Workshop- Standards of care and management of FSHDDownloadPDF2010 standard of careEnglish, Medicalenglish medical
Evidence-based FSHD care guideline – Summary for patients & families.DownloadPDFEnglishenglish
Evidence-based FSHD care guideline – Summary for clinicians.DownloadPDFEnglishenglish
A Guide for SchoolsDownloadPDFEnglish, Living with FSHDAdvocacy, Early Onset or Infatile, Pediatricenglish living-with-fshdadvocacy early-onset-or-infatile pediatric
A Guide for Friends and FamilyDownloadPDFBy Kelly Mahon, how to ask friends and family for the support you need when you have FSHD.English, Living with FSHDAdvocacy, Social Supportenglish living-with-fshdadvocacy social-support
Health TipsDownloadPDFEnglishenglish
Physical Therapy for FSHD BrochureDownloadPDFPhysical Therapy and FSHD brochure by Shree Pandya, PT, DPT, MS and Kate Eichinger, PhD, PT, DPT, NCSEnglish, Living with FSHD, MedicalExercise, Physical Therapyenglish living-with-fshd medicalexercise physical-therapy
Fact Sheet on FSHD / infantile-onset FSHDDownloadPDFEnglishenglish
About the FSH SocietyDownloadPDFEnglishenglish
About FSHDDownloadPDFFSHD symptoms, diagnosis, and geneticsEnglish, Living with FSHD, MedicalGenetic Counseling, Genetic Testing, Newly Diagnosedenglish living-with-fshd medicalgenetic-counseling genetic-testing newly-diagnosed
Tips for air travel with a power wheelchairDownloadPDFby Howard Chabner, lawyer, disabilities advocate, and world traveler.English, Living with FSHDAdvocacy, Travel, Wheelchairsenglish living-with-fshdadvocacy travel wheelchairs
A physiatric approach to FSH muscular dystrophy DownloadPDFPhysiatry or rehabilitation medicine coordinates multidisciplinary care essential for managing FSHD. By Susan Keeshin, MDEnglish, Living with FSHD, MedicalDiet and Nutrition, Exercise, Mobility, Orthotics, Pain, Physical Therapyenglish living-with-fshd medicaldiet-and-nutrition exercise mobility orthotics pain physical-therapy
FSHD Advocate 2019 Issue 2FSHD Advocate 2019 Issue 2LinkEnglish, Living with FSHD, Mental Health, Research, WellnessBasic Research, Clinical Research, Meditation, Supplementsenglish living-with-fshd mental-health research wellnessbasic-research clinical-research meditation supplements
FSHD Advocate 2019 Issue 1FSHD Advocate 2019 Issue 1LinkReporting from 2019 International Research Congress; follistatin, DUX4 structure; eye surgery;English, Living with FSHD, Medical, ResearchBasic Research, Clinical Research, Dry Eyesenglish living-with-fshd medical researchbasic-research clinical-research dry-eyes
FSHD Advocate 2018 Issue 3FSHD Advocate 2018 Issue 3LinkAntioxidants, DUX4 v PAX7, orthotics, ableism, high-intensity exercise, CRISPR, long-term disabilityEnglish, Living with FSHD, Medical, ResearchBasic Research, Diet and Nutrition, Exercise, Insurance, Orthoticsenglish living-with-fshd medical researchbasic-research diet-and-nutrition exercise insurance orthotics