NDF Aims to Reach More Patients with Events Planned for Philadelphia, Tel Aviv, and Beyond

Neuromuscular Disease Foundation (NDF) is pleased to announce the expansion of its Annual Symposium on GNE Myopathy from one event to several to be held throughout the world. Now in its sixth year, the fact-filled event includes up-to-the-minute information as well as presentations from scientists and industry professionals.

The Symposium will kick off in Philadelphia on May 4th at the Philadelphia Airport Marriott from 9:00 am to 5:00 pm EDT. Registration is now open for this event here.  Limited, regional travel scholarships and hotel rooms will be available for patients and caregivers who require it to attend.

Confirmed speakers in Philadelphia include:

  • Dr. Marjan Huizing, NIH
  • Dr. Paul Martin, Principal Investigator, Center for Gene Therapy, Nationwide Children’s Hospital
  • Dr. Kelly Hardin, Asst. Professor Department of Biology School of Behavioral and Natural Sciences, Mount St. Joseph University
  • Drs. Monkol and Angela Lek, NDF Scientific Directors and Yale School of Medicine

“We are thrilled to be able to bring this informative event to more cities and reach more patients this year,” said Lale’ Welsh, CEO.  “Being able to combine education and outreach with our scientific initiatives by collecting samples while we are all gathered is critical to our mission and the best use of resources.  Anyone affected by GNE Myopathy is encouraged to attend an event nearest them. We believe that the more information we share and collect will bring us closer to finding an effective treatment and, ultimately, a cure.”

Minimally invasive blood and skin tissue 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 scientific studies,  Biobank, Whole Genomic Sequencing Initiative and efforts to better understand mutations and the role of any modifiers within families.

The next NDF Symposium on GNE Myopathy will take place in Tel Aviv, Israel on May 29th. For more information about speakers and to register, please click here.