Cover art for podcast CoRDS Cast

CoRDS Cast

39 EpisodesProduced by Benjamin ForredWebsite

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 condi… read more

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Episode 37 - The Global DARE Foundation

November 16th, 2021

26:35

In our November edition of CoRDS Cast, Alyssa sits down with Kristie DeMarco who is the president and founder of the Global DARE Foundation. In 2019 Kristie was diagnosed with Refsum through genetic testing. In two …

Episode 36 - Cystinosis Research Foundation

September 1st, 2021

28:11

We are starting off September with a very inspiring story of two fathers who have children with Cystinosis. On this episode of CoRDS cast, Alyssa sits down with  Clay Emerson and Stephen Jenkins. Clay is a father to 6 …

Episode 35 - Gene DDX3x

August 9th, 2021

13:56

On this episode of CoRS Cast, Polly sits down with Robin Henry who is a strong advocate for DDX3x and also has a daughter, Lanie, with this …

Episode 34 - RERE Syndrome

July 1st, 2021

23:35

On this episode of CoRDS Cast, Alyssa sits down with Breanna, who is a strong advocate for RERE Syndrome. Breanna’s daughter, Loghan is one of 30 …

Episode 33 - SETBP1 Society

May 28th, 2021

28:27

On this episode of CoRDS Cast, Alyssa sits down with Haley Oyler and Lindsey Noonan to discuss the rare conditions their sons have, SETBP1.

Haley is the president and founder for the SETBP1 Society which brings …

Episode 32 - NEDAMSS

May 10th, 2021

24:19

On this month’s episode of CoRDS Cast, Alyssa sits down with Caroline Yiu. Caroline’s son Alex, was diagnosed with a very rare neurodegenerative …

Episode 31 - Maple Syrup Urine Disease Family Support Group (MSUD FSG)

March 5th, 2021

26:04

In today’s episode Alyssa speaks with Karen Dolins who is part of the Maple Syrup Urine Disease Family Support Group (MSUD FSG). Karen is a parent of …

Episode 30 - Tango2 Research Foundation

February 5th, 2021

22:29

In this episode of CoRDS Cast, Alyssa interviews David Longman from the Tango2 Research Foundation, and Dr. Michael Sacher, who is a professor in the …

Episode 29 - Endosalpingiosis Foundation, Inc.

January 5th, 2021

32:39

In this episode of CoRDS Cast, Polly sits down with Tabitha Frank, who is the founder of the Endosalpingiosis Foundation, Inc.  After Tabitha was …

Episode 28 - The Smith-Kingsmore Syndrome Foundation

December 3rd, 2020

29:42

On this episode of CoRDS Cast, Alyssa sits down with Kristen Groseclose and Dr. Carlos Prada with the Smith-Kingsmore Syndrome Foundation. Smith-Kingsmore Syndrome is a rare condition which is caused by mutations in the …

Episode 27 - Chloe Barnes Advisory Council on Rare Diseases

November 3rd, 2020

26:39

On this episode of CoRDS Cast, Alyssa sits down with the Chloe Barnes Advisory Council on Rare Diseases. We will be speaking with Erica Barnes who is the co-founder of the organization, Karl Nelson who is a Physician …

Episode 26 - Soft Bones, Inc.

October 5th, 2020

22:53

On this episode of CoRDS Cast, Alyssa and Polly sit down with Deborah Fowler who is the President and Founder of  Soft Bones, Inc. Hypophosphatasia …

Episode 25 - Richard Holl & Transient Global Amnesia

September 14th, 2020

19:56

On this episode of CoRDS Cast Alyssa and Polly sat down with Richard Holl who is not only the founder for the TGA project but a patient as well. TGA …

Episode 24 - Remember the Girls

August 6th, 2020

29:25

Today Alyssa sits down with Taylor Kane. Taylor founded Remember the Girls after learning that more than 50% of female ALD carriers go on to develop  physical symptoms--sometimes severe ones, and that many carriers of …

Episode 23 - Biotech spotlight: Aldevron

July 2nd, 2020

33:44

We hear about gene therapies and DNA technologies, but what goes on behind the scenes?  What is it like to work in the industry?  On this episode of …

Episode 22 - The White Sutton Syndrome Foundation

June 4th, 2020

27:38

On this podcast Alyssa sits down with Josh and Amanda Couch from the White Sutton Syndrome Foundation along with Dr. Reid Sutton.

Amanda is the Co-Founder and President of the White Sutton Syndrome Foundation and Josh …

Episode 21 - The PBCers Organization

May 1st, 2020

23:45

In this episode, Alyssa and Polly sat down with Carol Roberts from the PBCers Organization.  You'll hear Carol share information on her organization …

Episode 20 - IamGSD

April 13th, 2020

28:30

In this episode, Alyssa speaks with Stacey Reason and Andrew Wakelin with the IamGSD organization.  Stacey and Andrew are both diagnosed with one of the muscle GSDs that we cover in this episode, McArdle disease. …

Episode 19 - The Malan Syndrome Foundation

March 12th, 2020

29:58

In this episode Alyssa sat down with Christal Delagrammatikas with the Malan Syndrome Foundation, and Dr. Richard Gronostajski who is the Director of the genetics, genomics & Bioinformatics Graduate Program at the …

Episode 18 - Cure VCP Disease, Inc.

January 8th, 2020

41:59

In this episode, Alyssa and Polly spoke with Nathan Peck, the founder of Cure VCP Disease, Inc. and with Dr. Chris Weihl, a professor of Neurology at …

Episode 17 - The National Alliance on Mental Illness (NAMI)

December 11th, 2019

30:30

In this episode, Alyssa and Polly interviewed Wendy Giebink and Mallory Kloucek from the South Dakota chapter of NAMI, the National Alliance on …

Episode 16 - Our Odyssey

October 13th, 2019

25:59

In this episdode, we met with co-founders, Seth Rotberg and Kristina Wolfe, to discuss their newly founded organization called Our Odyssey.  The …

Episode 15 - Cure CMD and Two Rare Mama Bears

September 16th, 2019

37:43

In this joint podcast episode, Ben visited with Megan Meyer and Matty Manley, both moms to children living with a congenital muscular dystrophy …

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

August 30th, 2019

50:06

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. …

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

August 1st, 2019

32:20

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 …

Episode 13 - Managing complicated medical records

July 1st, 2019

37:24

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 …

Episode 12 - The Alagille Syndrome Alliance

June 1st, 2019

51:00

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 …

Episode 11 - NIH/NCATS RaDaR Toolkit

May 1st, 2019

29:37

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 …

Episode 10 - The Cornelia de Lange Syndrome Foundation

April 1st, 2019

35:42

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 …

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

March 1st, 2019

43:03

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 …

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

February 1st, 2019

37:02

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 …

Episode 7 - The Hypersomnia Foundation

January 1st, 2019

32:53

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 …

Episode 6 - The National Ataxia Foundation and Ataxia Research

November 30th, 2018

31:30

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!

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

October 31st, 2018

51:50

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 …

Episode 4 - The Finish Line Fund and Dr. Peter Vitiello

September 27th, 2018

37:07

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 …

Episode 3 - Noah's Hope & Research Involving Animals

August 31st, 2018

32:10

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 …

Episode 2 - Part 2

August 1st, 2018

20:35

In episode 2, we sit down with a handful of attendees at the 2018 Professional Patient Advocates in Life Sciences (PPALS) certificate training course …

Episode 2 - Part 1

August 1st, 2018

19:26

In episode 2, we sit down with a handful of attendees at the 2018 Professional Patient Advocates in Life Sciences (PPALS) certificate training course …

Episode 1

July 6th, 2018

14:58

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

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