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Welcome to "NDF TALKS…”

Each episode features a GNE Myopathy community member’s personal experience with GNE Myopathy.
Participants will include patients, scientists, caregivers and family members, all sharing the triumphs and sometimes tribulations of life with this rare disease in order to provide potentially helpful and supportive information for anyone whose life is touched by GNE Myopathy. 

 


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."

                                                   -Antionette

 

 

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.

 

 

              “I learned a new meaning of the word hope"

                                                                              -Gary This interview with Gary took place at our GNEM Symposia

 

 

“I someone tells me that I can’t go somewhere then I make sure that I go”

                                                                                                -Sabeen

 

 

“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."

                                                                                                                  -Maya

 

“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 GNEM

 

"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"

                                                                                                                                     - Tara