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.
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Sorry for my grammar and spelling mistakes. I didn’t turn on my english board.
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.
Thanks
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.
Can the vagus and phrenic nerves be affected by fshd?
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 KZread.
Clinical trials are poison. Cannabis and FSHD....
I've been waiting for 25 years for this. Hope this one makes it to market.
I´ve been waiting for more than 35 years!
Exciting news! Can't wait to hear the results of the 4 mg/kg part b study. Also they didn't mention anything about the mri results ( guess it's only been 4month so probably wouldn't show much)
I am very happy to be here! Grettings from México City
Great News! Thanks for sharing… Doctor´s explanation very understandable and clear. All of you are making And amazing expanation of fhsd desease… I will share with those who tell me: the problem is in your mind so hurra up and move dońt be lazzy
Great stuff as usual Tim!
Hello everyone, I am Wang Wen and I am very happy to meet you all through this way. I hope everyone will pay attention to me and FSHD patients in China. I look forward to communicating with you all
I so appreciate your attitude and encouragement. I can certainly start everyday with the intent of working out.
Hi . I follow this channel in the hope i might learn something about myself. I am BRITISH 68 years old I have had a very physical life ie I was a gymnast at school I left at 15 i then joined the military at 16 I was a physical trainer for most of my 22 years as well as teaching other subjects. when I left in 1993. I was diagnosed in 1995 FSH Dystrophy I had a gymnastics accident in my teens a trapped nerve and neglect left me with losing 60% mass in my right shoulder 10 years ago I started to lose nearly 80% of my quads. my doctor informed me it happens? The good news I go to my local pool and do five days a week exercise for the past ten years. to Which my medical professionals are pleased. THANK you for listening. George
I am a massive fan of the fshd society . Because sometimes I have felt very alone as I have fshd type 2 but in 20 years I've never got the chance meet others with my condition. I don't have any family members who have it bar a 2nd cousin in Australia who I have never met or spoke to . But is very reassuring seeing other people on your channel with similar problems to myself. Truthly have learned more from this channel than any NHS doctor I have a neurologist but is really hard to get an appointment i have seen him once in 5 years . I live in northern Ireland and am jealous of people who live in north American because you seem to have a lot more treatment options. All they offer is powerful pain killer but I do worry about the damage they may be doing to my liver
Thank you for providing the community with another great interview
Love this fshd straight talk!
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Cure pbbt🙄yeah right.
how common is a wasted diaphragm in patients with fshd?
Is a wasted diaphragm common in fshd sufferers?
I've had LGMD since high-school. I'm 41 now, and still walking. I get to participate in about 10% of life. I think what hurts the most are people. They can't comprehend the struggle or the pain it causes just to exist. It didn't take me long to realize that it wasn't me that needed to accept my condition, it was the people around me. I chose myself to never quit, while others around me urged me to stop. For anyone struggling with any form of disease, don't look to others to find hope. Hope exists only in yourself. People will let you down and not think twice. If you want something bad enough, you'll find a way to get it. Friends, acquaintances, and even family will tell you to stop. But, you have to fight. Fight for every inch and every muscle. There will be pain. There will be heartache. But, at the end of the day, there will be you. Then you can ask yourself, was it worth it? You will be loved. I can promise you that.
Keep going sir!!..we are waiting.
Can I ask question from Dr please?
If you post your question, we can definitely pass it along. Thanks!
@@FSHDSociety Sure please I would be grateful for you! Question _ Can hyperlordosis be cured or reverse in fshd ? Or how can we maintain through exercise. In this video I couldn't find proper exercise for hyperlordosis in fshd. Patient has hyperlordosis n because of that it's becoming difficult for doing daily activities. Pls ask her to mention the name of exercise through her experience of treating fshd patients. I will Google the name. Many of them I know but still wants advice of experienced doctor.
@@fatimakulsoom1820 Hello, this would be a great question to ask one of our FSHD Navigator volunteers. You can find more information and contact our Navigators directly: www.fshdsociety.org/for-patients-families/fshd-navigator/
The skepticism over testosterone is unwarranted. I think it needs to be looked at more. I've certainly had results. There might be an overlooked interaction between it and fat infiltration. Also, women seem to be affected the most severely out of all patients, perhaps testosterone is a factor here as well?
Excellent meeting and information!!! Thanks to all, for your great work!
Any current or potential (near) future studies on combining Ace 0311 and Ace 083 simultaneously ?
Great interview. It’s always interesting to hear others with fshd.
Thank you so much this is very appreciated 😊
Hello from India! Loved this episode particularly because I work out almost every day and sometimes managing the disease gets overwhelming
It seems as if your voice track while aligns with your mouth, it is moving very fast. Code to twice as quickly as your normal rate of speaking?
Great awareness, thank you!
I got diagnosed in my teens. It has slowly taking my mobility. Now in motorized and only walk with a walker in my home. Hard to keep a positive attitude!
‘25 one year to go … is this still a realistic target? Or just a ploy to get hold of investment funds!
🙃 Promo`SM
Hola, hace 30 años que recibí el diagnóstico, tengo 47, ya hace 2 años se me ha presentado más fuerte, uso bastón para caminar, mis piernas son cada vez más débiles y casi todos los días con dolor. Gracias a todos los que están trabajando en encontrar un tratamiento o la cura, espero estar para verlo y ser parate de ese gran descubrimiento 🙏. Saludos! 🌻
Cannabis, combined with a multi-disciplinary approach allowed me to regain normal function. I went from a disabled body to an abled body with cannabis for FSHD.
more info
Jane is an inspiring force whoever you are. An amazing woman with thoughtful ideas. She has helped me so much in the decades I have known her. Blessed to call her my friend.
Fantastic overview of where things stand regarding potential drug treatment. I'm happy that wheelchair users was mentioned at 46:45 because I've been quite disappointed that so many trials require the ability to walk. I've been a wheelchair user for about 20 years but I'm 49, on an official FSHD registry, eat healthy, don't smoke, have not had scapular fixation, have no heart abnormalities or major illnesses, am happy for MRI's, and am on no prescribed drugs. I wonder if criteria may relax if it becomes harder to fill trial places because there's certain to be more folks like myself out there who are prepared to accept places if offered.
Very Important Information 🙏🙏🙏
Love her and this outlook so much ❤ Thank you for sharing this story!!
Is there any genes therapy for FSHD
🙏🙏🙏🙏🙏🙏
Hey there, I'm wondering what is next please? How is it going?
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Great video, really informative - Raj is amazing and has made a huge difference in the UK FSHD sphere 👏🌟🙏
I'm 52 and I have FSH Dystrophy and every time I've tried bodybuilding exercises, I've noticed that, although there's an improvement, the disease seems to increase in intensity and I feel the characteristic pain of its degenerative process a lot.