CALL TO ACTION SUGGESTIONS FOR FSHD PATIENT COMMUNITY

Note: This is a call to action regarding this Patient Community Paper

?Please pick one or two (or more!) of the following items to do to get this paper into the hands of those who need to be informed about the?clinical, physical and psychosocial burdens of FSHD.?

?SOCIAL MEDIA

• Post and repost on Facebook and Twitter.
• When posting?@,?anyone personally “you” are connected to who is part of the media, any regulatory or granting body (FDA, NIH, private funding, etc.).?
• Hashtag #FDA #Insurance #NIH #raredisease #neuromuscular #epigenetic #healthadvocacy and anything that makes sense to you personally — the more variety the better.
• It is essential to always post general things such as #familymedicine #doctors #internists #nurses #nursepractitioners #medicalresearch — anything in clinical medical because, as we know, this disease is unknown to even people who are top in their fields.
• If you want to get personal attention on LinkedIn without having to?@ someone, send the link via email on LinkedIn to anyone you are connected to, or ask if someone you know who is connected to someone would send it for you. You don’t want to over @ people and annoy them; however, #companies, regulatory bodies etc., are just fine.?

WRITING TO ORGANIZATIONS

• If you have the time and are willing, consider sending the paper via email or snail mail. Below this list is a “template” with details you might consider incorporating into your email or letter. Send to:
• The FDA (currently the main regulatory agency to get any treatments passed through), NIH, any private foundations, any public granting sources, drug companies, investors, etc.?
• Physicians, physical therapists, nurses, patient advocates.
• The?Centers for Medicare and Medicaid (CMS) as there are so many people who are not getting the care they need.?

A template that might help you get started …

Dear __________:

I am a/an [person with/researcher of/advocate for people with/caretaker of someone with] facioscapulohumeral muscular dystrophy (FSHD). FSHD is a rare disease that devastates the lives of an estimated 1 out of 8,000 people. Although it is?considered?the?third?most common muscular dystrophy, there is no treatment, and certainly no cure to trial yet.?Considering its prevalence?among women, men, and children of all backgrounds, FSHD research?is grossly?underfunded.?In addition, the disease is either misunderstood or unknown to?many?in the?medical community, leaving patients to fend for themselves in a sea of information that they cannot make sense of on their own.?

As a result, a group of patients united to write a white paper recharacterizing the disease, and explaining what life is like living?with FSHD. Please take time to read this paper to learn more about the clinical, physical and psychosocial burdens of FSHD, and to get a first-hand look at what life is like for just a handful of the?~1 million worldwide with this horrible disease.?

Finally, please consider what you can do to spread awareness, and very importantly, to help move treatments and a cure to clinical trials swiftly and into the lives of those who desperately need them.

Sincerely,