To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education: A Patient's Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
168飞艇最新开奖结果下载 Latest Blog Posts
Feeling Fit with low-impact seated exercises
Disclaimer: Not every exercise is appropriate or safe for every individual, so please use your best judgement and consult your health care provider. Priscilla Sharun is a fitness enthusiast and active member of the international FSHD Instagram online community through her Instagram account FSHD Wellness. Priscilla brings her experience as a former Taekwondo instructor, 20…
Promising findings from Avidity’s myotonic dystrophy trial
A major breakthrough for the field of RNA therapeutics Avidity Biosciences announced today that its investigational treatment for myotonic dystrophy type 1 (DM1), called AOC 1001, can be delivered into the muscle of human patients to target the gene responsible…
FSHD University: Getting Trial ReadyZoom Web Conference
1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT | 19:00 CET Everyone in the FSHD world has a role to play in getting our community to be "trial ready." The FSHD Society's website is your portal to trial readiness. Many of you may not realize the...
Feeling Fit with FSHD: Qigong for immune function and energy
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the December “Feeling Fit” sessions, Frank Hanley will introduce several qigong exercises to help strengthen the immune system and improve qi flow. These exercises build on the abdominal breathing exercises that Frank introduced in September, and reviewed during...
CarePartner HourZoom Virtual Meeting
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we...
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.