MORRISTOWN, NJ – Goryeb Children’s Hospital, part of Atlantic Health System, served as the kickoff location on Saturday for the Parent Project Muscular Dystrophy’s 2018 End Duchenne Tour across America.
Parent Project Muscular Dystrophy is the largest, most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—a genetic disorder that causes progressive muscle degeneration and weakness in young males.
The no-cost, daylong event is open to parents, families, advocates, caregivers and physicians interested in the latest advancements in Duchenne care and research.
“Neurological and neuromuscular disorders like Duchenne can cause loss of function and mobility the longer they are undiagnosed and untreated, so there is a critical need for frequent communication about the latest treatments and research,” said Dr. Jahannaz Dastgir, medical director of the Pediatric Neuromuscular Medicine Program at Goryeb Children’s Hospital, who will also present at the meeting.
“Atlantic Health System is proud to partner with PPMD on its End Duchenne Tour to share research, and provide a safe, supportive forum for the Duchenne and muscular dystrophy community.”
“Throughout our 24-year history, PPMD has aimed to bring updates on research, care, and advocacy to families affected by Duchenne muscular dystrophy,” said Pat Furlong, founding president and CEO of the Parent Project Muscular Dystrophy.
“This is a unique experience for participants to better understand the progress being made in the fight to end this devastating disease, which the team at Goryeb Children’s Hospital experiences firsthand every day.”
Goryeb Children’s Hospital offers a number of specialty services for children with neurological and neuromuscular disorders and diseases, including:
- Autism and development – Goryeb Autism and Development Center
- Brain and spinal tumors – Goryeb Neuro-Oncology Program
- Concussion – Goryeb Concussion Program
- Epilepsy – Goryeb Epilepsy Program
- Headache and migraine – Goryeb Headache Program
- Muscle and nerve diseases – Goryeb Neuromuscular Program
- All general neurology problems
In addition, the medical center is currently pursuing a Center of Excellence designation from PPMD, which will enable its medical team to lead and participate in clinical trials. In 2017, Goryeb Children’s Hospital was the first hospital in the state to administer nusinersen, a newly approved medication to a patient with spinal muscular atrophy (SMA), a rare and sometimes fatal genetic disease that causes progressive loss of muscle strength and movement.
Additional sites on this year's tour include Washington DC; Cincinnati, Ohio; Birmingham, Ala., Grand Rapids, Mich., Minneapolis, Minn., Billings, Mont., San Francisco, Calif.; and Scottsdale, Ariz.