Neuromuscular Disease Foundation Earns 2020 GuideStar Platinum Seal of Transparency
Neuromuscular Disease Foundation (NDF) is proud to announce it has earned a 2020 Platinum Seal of Transparency with GuideStar, the highest level of transparency attainable. [...]
Nature.com: “Ways to Make Meetings Accessible” featuring NDF’s Dr. Monkol Lek
NDF Scientific Advisory Committee member, Dr. Monkol Lek, Yale School of Medicine, along with three other esteemed scientists with disabilities, share their experiences and advice [...]
Yale Medicine: “Rare Diseases: Customizing Cures, Patient by Patient”
Read about NDF Scientific Advisory Committe member, Dr. Monkol Lek's journey from computer engineer to Yale School of Medicine PhD focused on searching for a [...]
Cardiff University: “Researchers Discover Potential New Treatment for Rare Muscle-Wasting Disease”
In this article from November 2019, Cardiff University's School of Pharmacy and Pharmaceutical Sciences describes the early stages of their research to find a way [...]
Annual NDF Gala Yields Remarkable Results
Philanthropic and Scientific Collaboration Enables Small, Focused Nonprofit to Raise over $5M in 15 Months to Combat Rare Muscle Disease On what was labeled an [...]
NDF Announces All-Star Impact Winners
1st PLACE - Maya Davidovich Cohen - Israel A true “ALLSTAR”, 2019 has been a busy year for Maya in her efforts on behalf of [...]
“I choose to Focus on What I Can do, Not on What I Can’t” – Rushabh’s Story
Read an article posted on Newz Hook, India's 1st accessible news channel, about GNEM patient, Rushabh Desai's journey to diagnosis and the ways in [...]
From “Walk my Life to Drive my Life” – Saskia’s Story
Published in the June 2019 edition of Germany's Magazin Barrierefrei, GNEM patient Saskia Melches writes about some of her experiences since being diagnosed with [...]
“GNE Myopathy: Why it is a Bad Dream” – Shilpe’s Story
Read an article posted in Outlook Magazine and written by GNEM patient, Shilpe Bhattacharya, as she describes the challenges she has faced and the advocacy [...]
“From Shame to Strength” – Mona’s Story
Transformational Life Coach in the UK, Anjli Gheewala interviewed GNEM patient, NDF Certified Patient Advocate and Equity and Diversity Specialist, Mona Patel for her blog. [...]
