NDF Talks

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.

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.

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

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

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

"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

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

“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

“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

"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

“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

"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