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CoRDS Cast

CoRDS Cast

www.sanfordresearch.org/cords

This is CoRDS Cast, a rare disease podcast created by the team at Sanford Research. Our rare disease registry, CoRDS, connects patients and researchers everywhere. Here, you’ll hear interviews with patients, patient advocates, physicians, and researchers to raise awareness about the 7,000 rare conditions affecting 1 in 10 people worldwide.

17 - The National Alliance on Mental Illness (NAMI)

Dec 11 • 30 min

In this episode, Alyssa and Polly interviewed Wendy Giebink and Mallory Kloucek from the South Dakota chapter of NAMI, the National Alliance on Mental Illness. While not often discussed, mental illness and rare disease may go hand in hand - especially in…

16 - Our Odyssey

Oct 13 • 25 min

In this episdode, we met with co-founders, Seth Rotberg and Kristina Wolfe, to discuss their newly founded organization called Our Odyssey. The foundation serves the needs of young adults living with rare and/or chronic conditions. Together, Seth and…

15 - Cure CMD and Two Rare Mama Bears

Sep 16 • 37 min

In this joint podcast episode, Ben visited with Megan Meyer and Matty Manley, both moms to children living with a congenital muscular dystrophy (CMD). You may know Megan and Matty from their podcast, “Two Rare Mama Bears,” and we were so excited when they…

14, Part 2 - The patient & family perspective: KCNMA1 gene mutations

Aug 29 • 50 min

In this second part of Episode 14, Ben met once again with Dr. Sotirios Keros. On this interview, they were joined by Breteni Morgan-Berg, the mother of Kamiyah, a patient living with a mutation in the KCNMA1 gene. You’ll hear a powerful story of a…

14, Part 1 - KCNMA1 Research and Dr. Sotirios Keros

Aug 1 • 32 min

In part one of this two-part episode, Ben and Alyssa interviewed Dr. Sotirios Keros. He is a passionate pediatric neurologist with a background in neuroscience research. Through his clinical experience, Dr. Keros has become involved in research into a…

13 - Managing complicated medical records

Jul 1 • 37 min

In this episode, Austin and Ben spent some time with Jaime Husher from Sanford Health’s Health Information Management Department. Sanford HIM is responsible for maintaining and distributing each patient’s medical record. Jaime provides great insight into…

12 - The Alagille Syndrome Alliance

Jun 1 • 51 min

In this episode, Austin and Alyssa speak with Roberta Smith, the President of the Alagille Syndrome Alliance, and Dr. Kamesh Surendran of Sanford Research. Alagille Syndrome is a devastating rare genetic disorder that affects multiple organ systems.…

11 - NIH/NCATS RaDaR Toolkit

May 1 • 29 min

In this episode, Austin and Ben interviewed Dr. Eric Sid at the NIH’s National Center for Advancing Translational Sciences (NCATS) in the Office of Rare Disease Research. His team has been busy working on a toolkit that rare disease patients or patient…

10 - The Cornelia de Lange Syndrome Foundation

Apr 1 • 35 min

In this episode, Austin and Alyssa interviewed Bonnie Royster, the Executive Director of the CdLS Foundation, and Dr. Rich Haaland, who serves as the Chair of the CdLS Foundation Research Committee. You’ll learn about the condition, some of the research…

9 - All Things Kabuki - Rene King & Dr. Olaf Bodamer

Mar 1 • 43 min

Austin interviews the President & Founder of All Things Kabuki, Rene King, to learn more about the condition and what the group does to raise awareness and advocate for families living with Kabuki Syndrome. Joining them in the interview is Olaf Bodamer,…

8 - Klippel-Feil Syndrome Freedom & Philip Giampietro, MD, PhD

Feb 1 • 37 min

In this episode, Austin interviews Sharon Rose Nissley and Emily Lemiska from Klippel-Feil Syndrome Freedom about life with Klippel-Feil Syndrome and becoming patient advocates. The group is also joined by Dr. Philip Giampietro, a medical geneticist and…

7 - The Hypersomnia Foundation

Jan 1 • 32 min

Happy New Year from the CoRDS team! In this episode we interviewed Diane Powell, the CEO and board chair of the Hypersomnia Foundation. We also caught up with Dr. Lynn Marie Trotti, a sleep specialist and hypersomnia researcher. Together, they’re working…

6 - The National Ataxia Foundation and Ataxia Research

Nov 30, 2018 • 31 min

In this episode, Alyssa and Austin interview Sue Hagen from long time CoRDS partner, the National Ataxia Foundation. You’ll also hear from Lauren Moore, an ataxia researcher at the University of Michigan. Enjoy!

5 - The International WAGR Syndrome Association & Dr. Kevin Francis

Oct 31, 2018 • 51 min

In this episode of CoRDS Cast we interview John Morris from the International WAGR Syndrome Association and learn about the great work his group is doing to raise money for research and to raise awareness for his daughter’s disease. Later, we had the…

4 - The Finish Line Fund and Dr. Peter Vitiello

Sep 27, 2018 • 37 min

In this episode, we interview Dan Brendtro, a passionate father who began raising money by running marathons for his daughter, who has been diagnosed with Friedreich’s ataxia. His path to launching The Finish Line Fund led him to a researcher studying FA…

3 - Noah’s Hope & Research Involving Animals

Aug 31, 2018 • 32 min

In this episode of CoRDS Cast, we sit down with Jennifer VanHoutan from Noah’s Hope to hear about their work in Batten Disease advocacy and sponsored research. You’ll also hear from Sanford’s own Dr. Jill Weimer about her Batten Disease research program…

Aug 1, 2018 • 20 min

In episode 2, we sit down with a handful of attendees at the 2018 Professional Patient Advocates in Life Sciences (PPALS) certificate training course held earlier in the summer. In part 2 of this episode, you’ll hear interviews with Seth Rotberg from the…

Aug 1, 2018 • 19 min

In episode 2, we sit down with a handful of attendees at the 2018 Professional Patient Advocates in Life Sciences (PPALS) certificate training course held earlier in the summer. In part 1 of this episode, we interview Erin Hill from the Muscular Dystrophy…

Jul 6, 2018 • 14 min

Introduction to the CoRDS Registry, Sanford Research, and an interview with the man behind it all, Dr. David Pearce.