BoldMedicine

Episodes

1. 15

   Bina Shah, Project 8p

   "What's it going to take? it all comes down to WHO can we get involved. We have to keep reminding ourselves it's not about problems, it's about solutions." Chromosome 8p is a rare genetic condition with approximately 350 patients identified around the world and counting. In this week's episode…

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   Jan 22, 2020
2. 14

   Amanda Moore

   Amanda Moore joins us to talk about her new role as CEO of the Angelman Syndrome Foundation and her leadership within the rare disease community. Amanda and her family live in Indianapolis, Indiana. In 2015 Amanda and her husband, Adam, adopted twin boys, Jackson and Braden. Jackson was diagnosed...

   Jul 31, 2019
3. 13

   Karen Utley

   Karen Utley, President and co-Founder of the International Foundation for CDKL5 Research speaks with Amit about what it's like to be a leader in the rare epilepsy community, and what matters most to families affected by CDKL5 Deficiency Disorder. What makes me hopeful are the advances in science....

   Jul 31, 2019
4. 12

   Home By Midnight: Bringing Smiles to People's Lives

   As we enter the season of high school prom and joining community and friends to celebrate, Autism advocate and nonprofit founder Stephanie Mishler joins our podcast and talks about applying her love of hair and makeup to peers with special needs. College student and special needs advocate…

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   May 28, 2019
5. 11

   Paul Melmeyer / Rare Disease Day

   We're back, and there's no better time to kick off the 2019 season of BoldMedicine. February 28th is Rare Disease Day! Throughout the month of February hundreds of patient organizations from countries all over the world will hold awareness-raising activities celebrating the rare community of...

   Feb 11, 2019
6. 10

   Terry Jo Vetters Bichell

   Terry Jo Vetters Bichell has been the Director/Scientific Officer of the Angelman Biomarkers and Outcome Measures Alliance (A-BOM) since its inception in 2016. Dr. Bichell earned a PhD in neuroscience from Vanderbilt University in 2016, studying gene-environment interactions in Huntington’s…

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   Sep 7, 2018
7. 9

   Becky Burdine / Bold Move

   Becky Burdine impacts the rare disease community, the Angelman syndrome community and the scientific community in every way possible. Her approach is science driven and starts with the families in her community. Dr. Burdine is parent to a child with Angelman Syndrome, and was a founding member…

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   Aug 14, 2018
8. 8

   Global Genes

   Amit speaks with Kendall James-Davis, Senior Manager of Strategic Alliances at Global Genes, about the impact of patient involvement in discovery. Kendall talks about the remarkable team of advocates at Global Genes dedicated to supporting families affected by rare, genetic disorders....

   May 11, 2018
9. 7

   Sam and Alexis Maydew

   Amit is joined by Sam and Alexis Maydew, parents of a child with Angelman Syndrome. The Maydew's talk about their journey as parents, advocates and leaders in the Angelman Syndrome community.

   Apr 30, 2018
10. 6

    The Cute Syndrome Foundation

    Amit talks with Hillary Savoie, Founder of The Cute Syndrome Foundation. Hillary shares her journey as a parent and rare epilepsy community leader.

    Mar 21, 2018
11. 5

    Welcome to Ovid

    In the first episode we introduce our host, Dr. Amit Rakhit, MD, MBA. Amit talks about the core philosophy that makes Ovid Therapeutics different in our approach. Amit also shares a remarkable story that inspires him to come to work every single day -- and it starts with the pictures hanging on…

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    Feb 7, 2018
12. 4

    Why We Do What We Do

    Amit introduces Chief Scientific Officer and Founder, Matthew During, M.D., D.Sc., and core members of the Ovid Research team. Matt, Melanie, Toshiya, and Amit talk about the diverse science-driven Ovid family, and the patients who inspire them every single day.

    Feb 5, 2018
13. 3

    Lennox-Gastaut Syndrome

    Founder of the Lennox-Gastaut Syndrome Foundation, Christina Sanlnocecio, talks about innovative programs available for LGS patients and families. This incredible foundation is driving science and supporting every patient and family affected by Lennox-Gastaut Syndrome.

    Feb 5, 2018
14. 2

    Chelsea Leyland

    Chelsea Leyland shares her story of growing up with Juvenile Myclonic Epilepsy. Chelsea talks about her battle with rare epilepsy and the need to remove stigmas attached to the disease. In this episode we talk about what it's like to watch a loved one have a seizure, and how important early...

    Feb 5, 2018
15. 1

    NORD Summit and Dr. Google

    A hot topic at this year's National Organization for Rare Disorders (NORD) Summit was patient access to medication. In our patient-centric quick fire challenge, Amit tells us about the perfect patient partner.

    Feb 5, 2018