A personal and informative interview/podcast with Kam Redlawsk, GNEM patient and advocate who sheds light on the ableism in our society, ways to break down barriers, and reduce feelings of shame and isolation for people who are disabled.

A Conversation with Dr. Farid Holakouee, NDF’s Emotional Wellness Director, Carol Gelbard, LCSW and NDF CEO, Lale Welsh

Enjoy this podcast recapping themes covered in our recent patient HUDDLE detailing ways to “hit reset” in support of emotional wellness in 2021!

GNE Myopathy doesn’t mean you can’t follow your dreams or that your dreams can’t change.


For those of you who have been following our journey towards gene therapy for GNE myopathy, here’s a detailed conversation with our board chair Ralph Loren talking shop with our CEO Lalé Welsh.

If someone tells me that I can’t go somewhere then I make sure that I go.
So many of us are feeling extreme amounts of anxiety right now.
Carol Gelbard, LCSW

NDF is our big community & strength & force to do all these things. If NDF were not there we would not make it. With NDF I’m sure the cure will be found.

It is hard on my family, but we go on this journey together and I think it helps us. We are stronger together as a family.
Amy, on her and her 3 siblings all having GNE Myopathy
I’m so flabbergasted by GNEM in a good way in a really really good way because it has allowed me to become more of my true self.