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CoRDS Cast

CoRDS Cast

By Benjamin Forred
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.
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Episode 25 - Richard Holl & Transient Global Amnesia
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 stands for Transient Global Amnesia which is a sudden temporary episode of memory loss.  Richard will dive deep into his condition and describe what life is like living with TGA.
19:56
September 14, 2020
Episode 24 - Remember the Girls
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 the other x-linked recessive disorders are similarly affected. Besides running her own advocacy group Taylor is also a carrier of the x-linked disease Adrenoleukodystrophy (ALD) and became an advocate for ALD families at a very young age, helping to raise over $200,000 for ALD research.  This is a podcast you will not want to miss. Enjoy!
29:25
August 6, 2020
Episode 23 - Biotech spotlight: Aldevron
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 CoRDS Cast, Ben sat down with Dr. James Brown who is Aldevron's  Vice President of Corporate Development.  Aldevron started in 1998 and is a manufacturing company implementing strategies for expanding DNA, mRNA, antibody, and protein products and production services.  Among other things, Aldevron produces many of the inputs that go into gene therapies.  Join us as we take a dive into development services and custom manufacturing of nucleic acids, proteins and antibodies that provide companies with essential components for research, clinical and commercial applications.  Enjoy!
33:44
July 2, 2020
Episode 22 - The White Sutton Syndrome Foundation
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 is both the Creative Director and Secretary of the White Sutton Syndrome Foundation. They are parents  of three, the youngest of which has been diagnosed with White Sutton Syndrome. Dr. Reid Sutton is a clinical geneticist and clinical biochemical geneticist at Baylor College of Medicine & Texas Children’s Hospital in Houston. In his role as a clinical researcher with the Baylor-Johns Hopkins Center for Mendelian Genomics, he worked with graduate student Janson White on a number of projects, including the description of the spectrum of developmental and health issues in individuals with variants in the POGZ gene, that the Online Mendelian Inheritance in Man (OMIM) has designated “White-Sutton Syndrome”
27:38
June 4, 2020
Episode 21 - The PBCers Organization
In this episode, Alyssa and Polly sat down with Carol Roberts from the PBCers Organization.  You'll hear Carol share information on her organization and her journey as a rare disease patient diagnosed with Primary Biliary Cholangitis (PBC) which leads to cirrhosis of the liver.  Carol will lead us though her experience as an advocacy leader and a patient.  We hope you enjoy!
23:45
May 1, 2020
Episode 20 - IamGSD
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.  You'll hear about their advocacy efforts through IamGSD and learn about the diesease from their perspectives as patients.  Enjoy!
28:30
April 13, 2020
Episode 19 - The Malan Syndrome Foundation
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 University of Buffalo. Christal connected with Dr. Gronostajski which got him involved with Malan syndrome and further research. Here, you'll learn more about Malan syndrome and the efforts behind it as we dive deeper into the pod cast.
29:58
March 12, 2020
Episode 18 - Cure VCP Disease, Inc.
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 Washington University School of Medicine in St. Louis.  VCP disease is a complex degenerative disorder that involves multiple aspects ranging from muscle fatigue to dementia.  In this discussion, you'll learn about current research, the role and impacts patients have on therapy development, and get to hear from two of the men fighting to raise awareness.  Enjoy!  
41:59
January 8, 2020
Episode 17 - The National Alliance on Mental Illness (NAMI)
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 cases of depression and anxiety.  Here, Wendy and Mallory discuss the free programming offered by NAMI to provide education and counseling to those living with mental illness.  Hope comes through talking about struggles, and out of hope comes healing.  We hope you enjoy!
30:30
December 11, 2019
Episode 16 - Our Odyssey
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 Kristina have a vision for meeting the overall needs of this niche community within the rare and chronic healthcare space.  This is an information packed episode - enjoy! For more information on Our Odyssey, visit them at www.ourodyssey.org.
25:59
October 13, 2019
Episode 15 - Cure CMD and Two Rare Mama Bears
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 asked us to do a joint episode!  You'll hear discussion about summer weather in the midwest, the flow of events during Rare Disease Week on Capitol Hill, the mission of Cure CMD, and a bit about the CoRDS Registry too.  We hope you enjoy this episode - and be sure to subscribe to Matty and Megan's podcast at curecmd.org/podcast.  
37:43
September 16, 2019
Episode 14, Part 2 - The patient & family perspective: KCNMA1 gene mutations
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 family's life on the diagnostic odyssey, finding a diagnosis, and Breteni's relentless effort to do everything she can for her daughter.
50:06
August 30, 2019
Episode 14, Part 1 - KCNMA1 Research and Dr. Sotirios Keros
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 family of disorders related to mutations in the KCNMA1 gene.  In this episode, you'll learn about the gene and related disorders, current research in the space, and a unique perspective on patient advocacy from a very passionate physician scientist.  Enjoy!
32:20
August 1, 2019
Episode 13 - Managing complicated medical records
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 working with multiple healthcare systems to retrieve records, making effective requests for information, and ensuring that you have everything you need to take to a new clinic appointment.  This episode is packed with great information on a very important topic!  Enjoy!
37:24
July 1, 2019
Episode 12 - The Alagille Syndrome Alliance
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.  Roberta is both a parent of a child affected by Alagille Syndrome, and a tireless advocate who brings a refreshing perspective on advocacy for rare disorders.  Dr. Surendran leads a team of researchers at Sanford who study developmental biology.  One of the main projects of his laboratory is investigating the genetics behind Alagille Syndrome, and they seek to learn more about the kidney phenotype of the disorder.  There is a ton of information in this installment of CoRDS Cast - enjoy!
51:00
June 1, 2019
Episode 11 - NIH/NCATS RaDaR Toolkit
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 groups can use as a guide while navigating their course in developing a registry for their communities.  This is a valuable resource for advocacy groups of any size and is worth checking out!  The toolkit went live on Rare Disease Day 2019 and can be found here: https://registries.ncats.nih.gov.  Thanks for listening, and enjoy this episode of CoRDS Cast!
29:37
May 1, 2019
Episode 10 - The Cornelia de Lange Syndrome Foundation
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 activities currently going on, and hear from Bonnie and Rich on what the CdLS Foundation does to serve families affected by the syndrome.  Enjoy!
35:42
April 1, 2019
Episode 9 - All Things Kabuki - Rene King & Dr. Olaf Bodamer
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, MD PhD FACMG FAAP.  Dr. Bodamer is the Director of the Roya Kabuki Program at Boston Children's Hospital and leads a team of dedicated scientists and professionals to nurture a better understanding of the disease and develop treatments to better the lives of Kabuki patients.
43:03
March 1, 2019
Episode 8 - Klippel-Feil Syndrome Freedom & Philip Giampietro, MD, PhD
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 researcher, who has worked closely with both Sharon and Emily in their efforts to draw more of a research focus to Klippel-Feil Syndrome.  Thanks again for listening - enjoy!
37:02
February 1, 2019
Episode 7 - The Hypersomnia Foundation
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 to uncover the cause of the disorder and improve the lives of everyone living with idiopathic hypersomnia. Enjoy!
32:53
January 1, 2019
Episode 6 - The National Ataxia Foundation and Ataxia Research
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!
31:30
November 30, 2018
Episode 5 - The International WAGR Syndrome Association & Dr. Kevin Francis
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 chance to speak with Dr. Kevin Francis about the rare disease research being done in his laboratory and to hear about his WAGR Syndrome studies.
51:50
October 31, 2018
Episode 4 - The Finish Line Fund and Dr. Peter Vitiello
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 right in his home town, Dr. Peter Vitiello. We were fortunate to sit down with both men and ask them about the project and how the experience has shaped their hopes for the future. Enjoy!
37:07
September 27, 2018
Episode 3 - Noah's Hope & Research Involving Animals
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 and about how animals play a role in finding answers and developing treatments. Enjoy!
32:10
August 31, 2018
Episode 2 - Part 2
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 Huntington Disease Youth Organization, Olivia Montano from the PROS Foundation, and Rob Long & Brett Brackett from Uplifting Athletes.
20:35
August 1, 2018
Episode 2 - Part 1
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 Association and two of the PPALS event organizers, Jean Campbell and David La Greca.
19:26
August 1, 2018
Episode 1
Introduction to the CoRDS Registry, Sanford Research, and an interview with the man behind it all, Dr. David Pearce.
14:58
July 6, 2018