‘I live a beautiful life’: What wheelchair users wish you knew – and what to stop asking
"What's wrong with you?" "How did this happen?" People in wheelchairs encounter those questions regularly – and want people to know they are not OK to [...]
Neuromuscular Disease Foundation’s Dr. Kelly Crowe Presented with $20,000 Research Grant from Uplifting Athletes
Dr. Kelly Crowe is among 10 rare disease researchers to be awarded a grant at Uplifting Athletes’ Sixth Annual Young Investigator Draft presented by [...]
NDF’s Secret Weapon in Raising GNEM Awareness Is a Team of Motivated Young Professionals Who Are Leading the Way to A Healthier Tomorrow Through Genetic Screening Advocacy
The community of GNEM (GNE Myopathy) patients and families we are happy to support at NDF have long understood the unique challenges of advancing [...]
Accessibility: Where are we still falling short? Where can accommodations for disabled persons be improved?
“Staff were huffing and puffing whilst I held up their all-important drinks cart and told me that ‘in 27 years of working on airlines, [...]
The Beverly Hills Rotary Club Renewed its Support of The Neuromuscular Disease Foundation
On Monday, September 30, 2022, NDF’s Executive Director Geoffrey Gee, and NDF’s Emotional Wellness Director Carol Gelbard were invited to The Beverly Hills Hotel [...]
Rich Horgan Talks Gene Therapy, How He Feels about Egos in the Lab, and Guiding NDF to the Head of the Pack in Developing a Cure for GNEM
In 2020, The Neuromuscular Disease Foundation made history when it announced an ambitious plan to achieve the IND (Investigational New Drug) approval stage of [...]
NDF’s Research Program (IGTDP) Moves Closer to a Cure for GNE Myopathy (GNEM)
In 2020, The Neuromuscular Disease Foundation (NDF), a Beverly Hills based non-profit in order to advance research to end the muscle wasting disease, began [...]
Family Planning? Have You Considered Genetic Screening?
For individuals whose families carry genetic diseases such as GNE Myopathy (GNEM), genetic screening is the best-known tool for increased awareness among carriers of [...]
Life with GNEM: Voices from around the World Lift the Veil on the Patient Experience – Part 2
Click here for Part I Do you recall your initial thoughts when you received your diagnosis? When I was diagnosed by a doctor 17 [...]
Media Messaging on Inter-abled Relationships: What Are We Saying to The Disabled Community?
The trending Netflix show “Love on The Spectrum” features Autistic twenty-somethings who are navigating the dating world in search of long-term partners. This series [...]