Facioscapulohumeral Society

Filing Period

Jan 1, 2012 to Dec 31, 2012

Signed

Nov 14, 2013

Return Version

2012v2.1

Gross Receipts

$1,517,615

Mission

Major Activities

Activity 2

The fsh society organizes meetings, symposiums and workshops. The society's annual fshd international research consortium symposium for researchers worldwide yields immeasurable gains in our understanding of fshd. The 2012 fsh society fshd international research consortium was held in san francisco, california as an ancillary meeting to the american society of human genetics and was attended by 70 scientists, clinicians, researchers and fshd patients. This meeting is a key meeting for the international and worldwide research community for focusing on issues, collaborating, networking, and for filling in missing gaps in the research. Significant progress was made at the 2012 research consortium and research planning meeting priorities were set and planning documents disseminated. In accordance with its primary purpose of serving the fshd community in the united states and abroad, the fsh society has brought together through education, patient network meetings, support group meetings, peer-support, and advocacy to more than 6,000 fshd-affected families committed to working cooperatively. In june 2012, the biennial fsh society international patient researcher network day was held in atlanta, georgia. More than 200 fshd patients, families, friends, scientists and researchers gathered to listen to the latest findings in molecular genetics research and testing and the latest developments in clinical management and therapeutics of fshd. The main focus is for medical professionals and patients to be able to share ideas on the disease in a collegial setting. The fsh society also works with the community to foster research planning meetings, research education meetings and patient support groups. In 2012, the fsh society began efforts to organize funding agencies worldwide to better work together to solve fshd and to increase rigor, objectivity and transparency in preclinical research to increase the likelyhood of success with clinical trials on fshd. In 2012, fsh society organized a meeting for a global group working on fshd called the fshd champions. Fshd champions is an informal, international group consisting of fourteen fshd advocacy and funding organizations, to promote transparency and collaboration in fshd research. Meetings, symposia, workshops and networking activities are one of the most successful programmatic components of the fsh society.

Activity 3

Through the fsh society staff and its web site portal at www.fshsociety.org, electronic yahoo! Bulletin board, facebook pages, twitter, e-mail listserv (vertical response), and quarterly newsletter the fsh watch, fshd patients have found ways to be useful to basic and clinical researchers working on their disease. The support patients receive from one another through sharing their common experience is invaluable and immeasurable. The fsh society acts as a clearinghouse for information on the fshd disorder and on potential drugs and devices designed to alleviate the effects of the disease. It fosters communication among fshd patients, their families and caregivers, charitable organizations, government agencies, industry, scientific researchers, and academic institutions. The fsh society also provides dedicated support, education and outreach services to patients, professionals, researchers and families in need of assistance. In 2011 and continuing in 2012, the fsh society helps educate and recruit patients into research studies headquartered at the u.s. National institutes of health boston biomedical research institute senator paul d. Wellstone muscular dystrophy cooperative research center for fshd, in watertown, massachusetts. As a result the fsh society serving as the office of patient liaison and communication to the wellstone center it has helped facilitate the production of the world's largest resource for fshd biomaterials that are being made available to all researchers worldwide. The society hopes that this strategy will help with better reproduction, validation and corroboration of research results by providing the community with a high quality and high number of well controlled fshd cell lines that multiple research groups can independently access. The fsh watch is published quarterly, including a more technical and scientific annual research edition, and is distributed in hardcopy by u.s. Postal mail, electronically by e-mail and on-line at the society web site as adobe pdf files. The fsh society also designs, develops, publishes and distributes brochures on fshd and physical therapy for patients, families, friends and professionals involved with fshd. In 2012, the fsh society began to distribute its publication titled fshd: a guide for schools to help teachers and students affected with fshd better navigate the issues of fshd in the classroom. Publications, literature, education, patient support, social networking and research networking combined are the most significant and core programmatic components of the fsh society.

Filer

EIN

52-1762747