NDF Talks

Neuromuscular Disease Foundation
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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

Episódios

  1. 20/09/2022

    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 out ofEmory University School of Medicine. Estie graduated from Yeshiva University’s SternCollege for Women and then went on to complete her Masters in Genetic Counselingfrom the Ichan School of Medicine at Mount Sinai. She has a special interest incommunity education and outreach, and is proud to be a resource for individuals of herown community who are facing genetic health issues.

    45 min

  2. 19/09/2022

    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 NDF’s Emotional Wellness Director Carol Gelbard, LCSW, to discuss genetic testing and informed family planning. Dr. Shahin Ghadir and Carol Gelbard, LCSW, also talk about PGD preimplantation genetic diagnosis, a tool used to reduce the risk of passing on inherited conditions. This informative discussion is here to empower prospective parents by helping them make informed reproductive choices.

    24 min

  3. 26/07/2021

    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 lives of people living with GNE Myopathy through advocacy, education, outreach, and funding critical research focused on treatments and a cure. To learn more about GNE Myopathy visit: https://www.CureGNEM.org

    35 min

  4. 27/05/2021

    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, and funding critical research focused on treatments and a cure.   To learn more about GNE Myopathy visit: https://www.CureGNEM.org

    18 min

  5. 16/04/2021

    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 critical research focused on treatments and a cure. To learn more about GNE Myopathy visit: https://www.CureGNEM.org

    14 min

  6. 16/04/2021

    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 cure. To learn more about GNE Myopathy visit: https://www.CureGNEM.org

    5 min

  7. 16/04/2021

    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 through advocacy, education, outreach, and funding critical research focused on treatments and a cure. To learn more about GNE Myopathy visit: https://www.CureGNEM.org

    31 min

  8. 16/04/2021

    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 about GNE Myopathy visit: https://www.CureGNEM.org

    15 min

  9. 16/04/2021

    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 more about GNE Myopathy visit: https://www.CureGNEM.org

    19 min

  10. 16/04/2021

    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, and funding critical research focused on treatments and a cure. To learn more about GNE Myopathy visit: https://www.CureGNEM.org

    5 min

  11. 16/04/2021

    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, education, outreach, and funding critical research focused on treatments and a cure. To learn more about GNE Myopathy visit: https://www.CureGNEM.org

    16 min

  12. 16/04/2021

    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 research focused on treatments and a cure. To learn more about GNE Myopathy visit: https://www.CureGNEM.org

    13 min
  • 12 episódios

Sobre

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

Informação

  • Autoria
    Neuromuscular Disease Foundation
  • Anos em atividade
    2021 - 2022
  • Episódios
    12
  • Classificação
    Para todos
  • Copyright
    © Neuromuscular Disease Foundation
  • Site do programa
    NDF Talks