Our Promise As long as we are here, no patient need ever face this disease alone. And with generous donations from patients, families, friends, major donors, and sponsors, the FSHD Society will keep working to accelerate research leading to treatments by 2025 and eventually a cure.
Our Vision: A world free of the suffering caused by FSH Muscular Dystrophy (FSHD)
Our Mission: Find treatments and a cure for FSHD while empowering our families
Our Core Values: Research | Community | Urgency
The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people world.
Lol, Kate is so brat (EDIT: I’m too old to know how to use that properly, but I think I managed to make it flattering?). I feel sarcasm’s an unavoidable consequence of FSHD, just with the sheer volume of interactions when people can’t read our faces right. I’m a Portland local and excited to discover this playlist and that Mitch is local, too! I’ve seen a local physical therapist Marvin Smith a few times who’s followed a lot of the literature and treats another family member with FSHD.
Got to see Good Bad Things this weekend on Veeps, after learning about it from Hannah and Shane from Squirmy & Grubs! I was really blown away. I can't believe the director and lead are new to making features! Amazing! The performances were so grounded, the script felt natural and draws you in, and the look is beautiful. Looking forward to seeing an even wider distribution in the future so more people can see it! :)
BiopHARM research is nothing but poison!!! Cannabis and Facio Scapulo Humeral Muscular Dystrophy Minnesota. STOP donating to pHARM funded research which is only designed to kill us all anyway. pHARMa has NEVER cured anything anyway!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
You're positioning yourselves to sell us out and profit off of people believing that toxic nanoparticle drugs can cure us. It's such a lie!!!!!!!!!!!!!!!!!!!!!!!!!!!
Brittany, You should come to the Wellness Webinar on the second Monday of each month. It’s 5 o’clock ET, 4 Central, 3 Mountain and 2 Pacific time. There are people from across the U.S. and Canada, plus international participants. There’s a 30 min informal session prior to the hour long Webinar.
Here is a 14-year-old boy with FSHD. To protect him from injuring his muscles during daily activities, can he be given branched-chain amino acids or creatine monohydrate?
One of my daughters, Diane Buck, for the June Wellness Webinar gave a program on food preparation, shopping, etc. I saw that it’s on the Society’s website last week. I have FSHD and a photo I came across when I was in my late teens showed visible proof of the disease. Mine was confirmed at the U of Iowa Hospitals and Clinics through a blood drawn in May 2014, I was 65 years old. In my case by not getting the diagnosis until later in life and it must have been a slow progression, I was able to lead a fairly normal life. Participated in sports in high school, college, summer recreation leagues of baseball. I think Diane’s program would mesh with this one on nutrition. She had three papers that would make meals overall easier to plan and she also focused on not using commercially produced foods and use natural whenever possible.
Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota. I rebuilt my entire body from severe debilitation and chronic intractable pain once associated with FSHD.
Can anyone set up a walk and roll fundraiser ? am I live in northern Ireland and there very little support here in northern Ireland I was diagnosed 17years ago in my early 20s and am still to meet or speak to anyone with my condition would love to compare my experiences with someone who understands . Even know 95% of people have a parent with fshd .I am not in that group I am I'm the 5% of people who dont I think my mother is a carrier . I have not seen a doctor or physical therapist in years even know I ask .I have had shoulder blade stabilisation operation and was not even offered physio even know I asked .only to find out the fshd society recommed it . I am honestly jealous of people in the USA I had to research about ankle braces after developing foot drop and I have limited options has I dont work and can not afford expensive one .I use one with elastic strap connected to shoes . But would love 1 with shin support as there is a lot of muscle wastage in my shin any suggestions on websites where I could buy 1 at affordable prize
so after thousands of repetitions walking over a year or two could you wean off because stronger? i had stroke w a little foot drop got a little better but fell broke hip now weak starting over hyperextending i hate afo and would eventually like no assistive device
Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota. I have been able to rebuild my entire body with cannabis, combined with a multi-disciplinary approach. Cannabis is safer and more effective than Losmapimod, AOC1020, and anything else in clinical trial. I also developed my own style of art, and have gone back to work out of complete disability and dragged out divorce process...
I rebuilt my entire body from everthing FSHD ever did to it with cannabis and a multi-disciplinary approach. Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota.
Highlights foi os resultados que a Avidity apresentou, finalmente, parece que falta pouco para vida voltar. Precisamos de uma aprovação antecipada, os resultados são excelentes e nós não temos nada. 🙏🙏
Hey guys! I am Jorge from Mexico and I am your fan 🎉 I started to follow you and si really amazing what you are doing: thank you for MAKE VISIBLE GREAT PERSONS THAT ARE LIVING WITH FSHD. I was diagnosed in my earlies 15. Since that time till now I can handle very well my fshd… but when I was 42 weackless appeaers with strengh. I was in Rome and when I haved to run take the bus I fall down. Now I am arriving to my 50’s and I achieved a lot of problems and dilemas that my family don’t understand even my mom and my sister have fshd. Also I am fighting to get out form drugs; At the very first time the drugs give me strenght and the power to move quickly even to go up and down stairs by myself. However all the perplejo se my drug adiction and give me a lot of possible solutions but when I ask for help for my fshd they only say that doesn’t really maters and that’s what REALLY MATERS. Well thank you for your increíble programa that makes visible this very strange desease and help us to make bealive to the others that even the most easy things are dificultades for us, ex. Walk with out fall everywhere in every time and they don’t tel me: keep on with your drugs up you dead… Have a nice Sunday guys.
I've been able to rebuild my body, transition out of Ankle Foot Orthotic braces, and fully recover from bilateral Scapulo Thoracic Fusions with cannabis, combined with a multi disciplinary approach. Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota.
i am 69 and I got diagnosed in 2014. Now I am told to keep the heart and lungs healthy so I ride a stationary bike to get my blood pumping. I wonder how many individuals loved sports before the disease really slowed them down. I loved basketball as a kid. Keep fighting!!
I’ve had physical therapy numerous times before and after my diagnosis in May of 2017. About 2 years ago I heard that one of the facilities I’ve been to in the past was hiring a physical therapist that only worked with people with neurological conditions. It made a world of difference in that in the past I reached a point where my body would rebel against the therapy and be on a plateau. We couldn’t get past it and they’d tell me that there wasn’t much they could do as we’d gone as far as we could go. So they’d release me from treatments, Medicare has standards of progress, which played into it. With my current therapist we’ve worked around any plateau that we’ve encountered and that’s made all the difference. Even after two hip replacements since May 2023 I continue to make progress. Not as fast as I want but she points out to me where I began and where I am now and how well I’m doing. I let her bring any therapist in training to join in touch, ask questions, nothings off the table. I figure I’m helping others by being available.
Tim, Is FSHD really the most common type of MD? I’ve heard that it’s the second &/or third most common form? Some of the info has been 1 in 6-8K have it in the Netherlands and 1 in 10/11K here in the U.S. I usually miss your show because I’m generally in physical therapy for the better part of your program. I have FSHD and almost 2 years ago I began P/T with a therapist that only works with individuals with neurological issues. WHEN I first learned about her I had my neurologist write a script for working with this specific therapist. Since then I’ve had two hip replacements, one to replace a joint that was partially slipping out. In between my start to now it’s been either in relation to my hip issues &/or FSHD or both in conjunction with each other. This has helped me gradually work through those plateaus where in the past my body would rebel and therapist would tell me that we aren’t making progress and would stop the therapy. Medicare regulations were behind those decisions to stop. One of my therapy days was on a Wed for June so I’ve been able to watch. Otherwise I usually catch you on RU-vid.
