CoRDS Cast

Episode 1

An episode of CoRDS Cast

By Benjamin Forred
About
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.
More places to listen
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.
www.sanfordresearch.org/cords

More places to listen

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
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