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NDF Talks

by Neuromuscular Disease Foundation

Welcome to the Neuromuscular Disease Foundation's podcast "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. About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach, and funding

Publisher-supplied feed metadata · PodParley refreshed Apr 4, 2026 · Source feed

Episodes

  1. NDF Talks: "Getting To Know Your Genes" with genetic counselor Estie Rose

    NDF Talks is happy to have Estie Rose educate us on the importance of pre-conception genetic screening and options available to help you have a child. Estie is a certified genetic counselor and outreach coordinator forJScreen, a national non-profit Jewish genetic disease screening program based…

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  2. NDF Talks: Planning The Future With Dr. Shahin Ghadir & NDF Emotional Wellness Director Carol Gelbard, LSCW

    NDF Talks is happy to share a podcast from "The Fertile Life" with Dr. Shahin Ghadir that our Director of Emotional Wellness, Carol Gelbard, LCSW participated in In this episode of "The Fertile Life" podcast, Dr. Shahin Ghadir, Fertility Specialist, and former NDF Board Member sits down with…

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  3. NDF Talks: Breaking the Taboo of Disability

    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. About NDF: Our mission is to enhance the quality of the…

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  4. NDF Talks: The Problems With Ableism In Our Culture

    The problems with ableism in our culture; A Conversation with Dr. Farid Holakouee, NDF's Emotional Wellness Director, Carol Gelbard, LCSW and NDF CEO, Lale Welsh About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach,...

  5. NDF Talks with: Carol Gelbard, LCSW about Promoting and Supporting Wellness in 2021

    Enjoy this podcast recapping themes covered in our recent patient HUDDLE detailing ways to “hit reset” in support of emotional wellness in 2021! About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach, and funding...

  6. NDF Talks with: Mother/Caregiver of GNE Myopathy patients, Antionette

    "GNE Myopathy doesn't mean you can't follow your dreams or that your dreams can't change." -Antionette About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach, and funding critical research focused on treatments and a...

  7. NDF Talks with: CEO Lale Welsh Discusses the journey to gene therapy for GNE Myopathy with NDF Board Co-Chair Ralph Loren

    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. About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy…

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  8. NDF Talks with: GNE Myopathy Patient, Sabeen

    “I someone tells me that I can’t go somewhere then I make sure that I go” -Sabeen About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach, and funding critical research focused on treatments and a cure. To learn more...

  9. NDF Talks with Carol Gelbard, LCSW about stress management

    “So many of us are feeling extreme amounts of anxiety right now...” -Carol Gelbard, LCSW About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach, and funding critical research focused on treatments and a cure. To learn...

  10. NDF Talks with: GNE Myopathy Patient, Maya

    "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 About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach,...

  11. NDF Talks with: GNE Myopathy Patient, Amy

    “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 About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy…

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  12. NDF Talks with GNE Myopathy Patient, Tara

    "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 About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach, and funding critical...

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ABOUT THIS SHOW

Welcome to the Neuromuscular Disease Foundation's podcast "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. About NDF: Our mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach, and funding

HOSTED BY

Neuromuscular Disease Foundation

CATEGORIES

Frequently Asked Questions

How many episodes does NDF Talks have?

NDF Talks currently has 12 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.

What is NDF Talks about?

Welcome to the Neuromuscular Disease Foundation's podcast "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...

How often does NDF Talks release new episodes?

NDF Talks has 12 episodes. Check the episode list to see recent publication dates and frequency.

Where can I listen to NDF Talks?

You can listen to NDF Talks on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.

Who hosts NDF Talks?

NDF Talks is created and hosted by Neuromuscular Disease Foundation.
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