Event Includes Presentations from Scientists and Industry Experts, plus Patient Advocacy Sessions
Beverly Hills, CA. – May 22, 2019: Neuromuscular Disease Foundation (NDF) recently announced the expansion of its Annual Symposium on GNE Myopathy from one event to several being held throughout the world. This year’s first event took place in Philadelphia on Saturday, May 4th, and the next is on Wednesday, May 29th in Tel Aviv, Israel. Now in its sixth year, the fact-filled event includes up-to-the-minute information, patient wellness and advocacy sessions, and presentations from scientific and industry experts.
The Tel Aviv event will take place at the Crowne Plaza Tel Aviv City Center Hotel. Registration is still open for this event here with limited, regional travel scholarships and hotel rooms available for patients and caregivers who require it to attend.
Confirmed speakers in Tel Aviv include:
- Dr. Stella Mitrani-Rosenbaum, Genetic Therapy Institute, Hadassah Medical Center
- Dr. Angela Lek, Yale School of Medicine and NDF Associate Scientific Director
- Dr. Kelly Hardin, Assistant Professor of Biology at Mount St. Joseph University
- Dr. Noah Weisleder, Associate Professor, Physiology and Cell Biology, Ohio State University
- Dr. Marjan Huizing, Clinical Project Manager of GNE Myopathy Clinical Studies, NIH/NHGRI
“We are eager to bring GNEM specific symposia to patients and their families all around the world,” said Lale’ Welsh, CEO. “It is crucial that we, not only identify patients and their families to include in our mission, but also converge all aspects of our programs efficiently through support, education, collaboration and the collection of data and samples from patients which will expedite our current studies supporting gene therapy.”
Saliva samples will be requested on a voluntary basis from patients and, if possible, from their unaffected immediate blood relatives (parents, siblings or adult children) who may be interested in supporting NDF’s Whole Genomic Sequencing Initiative to better understand mutations and the role of any modifiers within families.
GNE Myopathy is a form of muscular dystrophy; a rare muscle-wasting disease striking teens and young adults in the prime of life, currently with no treatment or cure. The Neuromuscular Disease Foundation (NDF) has been funding studies for gene therapy, most recently through a match grant. Its mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM.)