It’s A Marathon, Not A Sprint – Why Is This Ultra Rare Disease So Difficult to Diagnose?
We Talk to Doctor and GNEM Patient Suleyman Kus, about His Journey to Diagnosis, and What the Medical Community Can Do Better.Doctor Suleyman Kus of [...]
How The NDF Maintains Transparency with Patients & Donors
Running a nonprofit is not for the faint of heart. It requires drive, vision, extra doses of passion, resourcefulness, and impeccable communication skills. It [...]
What Are The Most Common Neuromuscular Diseases?
Let’s start by understanding what is a neuromuscular disease. Neuromuscular diseases affect the function of muscles due to problems with the nerves and muscles [...]
The NDF Welcomes Geoffrey M. Gee, Esq. as Newly Appointed Executive Director
The Neuromuscular Disease Foundation (NDF) announced that its Board of Directors has appointed Geoffrey Gee, Esq. as Executive Director, effective January 1st, 2022. He [...]
Rare Leader: Geoffrey Gee, Executive Director, Neuromuscular Disease Foundation
A recent interview with NDF's new Executive Director Geoffrey Gee by Global Genes. Disease focus: GNE myopathy is a rare, inherited disease that causes [...]
NDF Takes the Lead in Global Race to Develop Gene Therapy Treatment for GNEM
The Neuromuscular Disease Foundation (also known as NDF) has garnered global attention by making notable advancements in their ambitious plan that was announced in [...]
Why Rare Disease Day is So Important to the Neuromuscular Disease Foundation
The Neuromuscular Disease Foundation (NDF) celebrates Rare Disease Day with its mission to improve treatment and opportunity for the 300 million people worldwide living with [...]
Rushabh Desai Talks About the Struggles of Living with Rare Muscular Disease GNEM
By Dana Corddry Imagine living in a culture where the stigma of having a physical disorder were still very much present. Or where society [...]
THE HIDDEN CHALLENGES FACED BY DISABLED TEACHERS
Determined to lift the lid on disability, teacher Valenee Gosine discusses the impact of her GNE Myopathy diagnosis upon her profession with Karen Olney. There’s a resounding [...]
The Philosophy of Giving: We Talk with Longtime Board Member and Serial Philanthropist David Haverim about Generosity and The Future of NDF
By Dana Corddry I was fortunate to speak with David Haverim, successful businessman and Board member of the Neuromuscular Disease Foundation (NDF) recently, about [...]
