FSHD Connect Unites Patients, Doctors and Researchers to Explore New Insights on Rare Disease
Boston, MA (August 18, 2014) (PRWEB) August 18, 2014
The FSH Society, the Massachusetts-based charitable non-profit organization, is pleased to announce that Senator Elizabeth Warren expressed her support for the Biennial “FSHD Connect” International Network Meeting and FSHD research and awareness, in her opening video remarks on Saturday, August 16. The meeting, held August 16-17, 2014 at the Westin Boston Waterfront hotel, was one of the largest gatherings of Facioscapulohumeral muscular dystrophy (FSHD) patients, clinicians and researchers providing two days of immersive learning and community-building.
“This is such an important event. By bringing together a strong grassroots network of FSHD doctors, researchers and patients from around the country and around the world, the FSH Society is advancing the fight to treat and cure FSHD,” said Senator Elizabeth Warren in her video remarks. “I’m proud that the FSH Society is based right here in Massachusetts. I’m also proud that the University of Massachusetts Medical School is home to a Senator Paul Wellstone Muscular Dystrophy Cooperative Research Center.”
In her welcoming keynote, Senator Warren expressed her support for the National Institutes of Health’s funded research, such as the work undertaken at the University of Massachusetts Medical School NIH Senator Paul Wellstone Center for FSHD. Warren emphasizes her commitment to strengthening NIH funding and fighting to renew the United States’ commitment to critical medical and scientific research.
Warren is a co-signer of the Muscular Dystrophy Community Assistance Research and Education Act of 2014 (MD CARE Act), which mandates research and investigation into all forms of Muscular Dystrophy. The act was recently approved by the House of Representatives and is expected to pass the Senate vote in the coming days. Senator Warren also encouraged the FSHD community to continue its grassroots efforts outside of Washington, D.C. that pressure legislators and have a lasting, significant impact for FSHD patients and their families.
“The FSH Society was a key participant in drafting the MD Care Act and we greatly appreciate Senator Warren’s support in this initiative,” said Dan Perez, FSH Society co-founder, President and CEO. “The MD CARE Act has helped provide nearly $462 million dollars in additional NIH funding since its inception and we’re hopeful that the act will be a continuing reality for the FSHD community.”
This year’s Biennial FSHD Connect International Network Meeting featured talks by prominent local, national and international leaders in the field of FSHD. The meeting, which gathered more than 200 FSHD patients, clinicians and researchers in one location, is crucial to the close-knit FSHD community and represents a special opportunity to network with experts in the space as well as interact with and learn from those affected firsthand by the disease. Patients have come from as far away as Australia and Kenya for the unique opportunity to meet so many other patients and experts.
Adapted from PRWeb release.
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