PODCAST · health
CoRDS Cast
by Sanford 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.
Episodes
-
Episode 51 - Maple Syrup Urine Disease (MSUD)
Welcome to another episode of CoRDS Cast where Polly had the honor of sitting down with Dr. Karen Dolins, who is a registered dietician and is also a mother to her daughter who was diagnosed with Classic MSUD. We also have the privilege to sit down with Sandy Bulcher, who is a nurse and the…
more -
Episode 50 - NUS1 Foundation
On this episode of CoRDS Cast you will hear from Andrea Johnson and Carissa Carman who are not only the co-founders of the NUS1 Foundation, but also amazing parents to their sons who are diagnosed with NUS1. We also get the pleasure of speaking with Richard Steet who is the Director of Research…
more -
Episode 49 - BFLS Inc.
Tune in as Polly sits down with Kearstyn Shaw and Dr. David Picketts with BFLS Incorporated. Kearstyn's son was diagnosed with BFLS in 2021. Kearstyn has been a strong advocate for her son and her community since the diagnosis. Dr. David Picketts is a researcher at the Ottawa Hospital Research...
-
Episode 48 - KBG Syndrome Association
On this episode of CoRDS Cast, Polly sits down with Brianna Dose with the KBG Syndrome Association. Brianna is not only a strong advocate for her community but she also has a daughter with this rare condition. While being a pediactric nurse in neurology, she was put in the exact postition she...
-
Episode 47 - Coffin Lowry Syndrome Foundation
On today's episode, Alyssa and Polly sit down with Theresa who is a part of the Coffin Lowry Syndrome Foundation. Theresa's son was diagnosed with Coffin Lowry Syndrome at the age of four. Theresa discusses the long journey ahead to finding a diagnosis for her son. Theresa has been a major part…
more -
Episode 46 - LEMS Family Association
Join us on a special podcast with Price Wooldridge as he discusses his journey navigating Lambert Eaton Syndrome (LEMS). Price is not only a strong advocate for the LEMS Family Association, but is a patient himself. Learn about his amazing journey to finding answers and living with LEMS. To learn...
-
Episode 45 - HODA
On this episode of CoRDS Cast, Alyssa sits down with Becky from HODA (Hypertrophic Olivary Degeneration Association). Becky is an amazing advocate in the rare disease space as her sister is diagnosed with HOD. Tune in to listen to her story. To learn more information on HOD, please visit:...
-
Episode 44 - CoRDS Recap and Updates
On this episode of CoRDS Cast, Ben and Polly sit down to discuss the recent updates to the CoRDS registry platform and our plans for future improvements. Enjoy!
-
Episode 43 - Recruiting to Patient Registries
On this exciting episode of CoRDS Cast, Alyssa sits down with Sophia Zilber from the Cure Mito Foundation and Allison Peck from Cure VCP Inc. Sophia and Allison are both very strong advocates for their foundation and have done an amazing job recruiting to their registries. Tune in to learn how…
more -
Episode 42- Kennedy's Disease Association
On this episode of CoRDS Cast, Alyssa sits down with Terry Thompson, Jameson Parker, Ed Meyertholen, and Chris Grunseich with the Kennedy’s Disease Association. Kennedy’s Disease is a defect in the ‘X’ Chromosome, and it makes testosterone almost a poison to the body. The disease is Spinal Bulbar...
-
Episode 41 - Cure Mito Foundation
On this month's episode of CoRDS Cast, Alyssa sits down with Kasey Woleben who is one of the founders of the Cure Mito Foundation, and Sophia Zilber who is the board member, patient registry director. Kasey and her family have started several non-profits to save their son, Will, and other…
more -
Episode 40 - CLN3 Batten Disease
On this episode of CoRDS Cast, Ben sits down with Jacquelyn Stockdale who is the mother of Isla. Isla is an amazing child living with CLN3 Batten Disease. Isla first started having issues with her eyesight and was later on seen by an ophthalmologist. Later down the road, Isla was diagnosed with...
-
Episode 39 - Scheuermann’s Disease Fund
On this episode of CoRDS cast, Polly gets the pleasure of sitting down with Doug Strott. Doug is the founder/president of the Scheuermann’s Disease Fund and also has this condition. Scheuermann's Disease is a spinal (skeletal) disease that typically presents itself in children during adolescence....
-
Episode 38 - Myhre Syndrome Foundation
On this episode of CoRDS Cast, Alyssa sits down with Kathy Young who is a strong advocate for Myhre Syndrome and also has a daughter diagnosed with this condition. Kathy’s daughter was diagnosed with Myhre Syndrome seven years ago and at this time there was not an organization or group created…
more -
Episode 37 - The Global DARE Foundation
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 years she went from an iron man triathlete to walking in constant pain along with...
-
Episode 36 - Cystinosis Research Foundation
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 year old Brooke who was diagnosed with Cystinosis at just 16 months. Stephen is…
more -
Episode 35 - Gene DDX3x
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 condition. DDX3x Is caused by a spontaneous mutation at conception. This condition Primarily affects girls due to its location on the X-chromosome, though...
-
Episode 34 - RERE Syndrome
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 diagnosed in the entire world with this condition. If you would like to follow Loghan and Breanna’s story, you can visit her Facebook page, Learning…
more -
Episode 33 - SETBP1 Society
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 awareness to this condition and unites families and researchers. While working with…
more -
Episode 32 - NEDAMSS
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 disorder called NEDAMSS (Neurodevelopmental Disorder with Regression, Abnormal Movements, Loss of Speech, and Seizures.) This condition is caused by a...
-
Episode 31 - Maple Syrup Urine Disease Family Support Group (MSUD FSG)
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 an individual who has a diagnosis of maple syrup urine disease. Being a registered dietician, she was aware of this condition prior to her child...
-
Episode 30 - Tango2 Research Foundation
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 biology department at Concordia University. TANGO2 itself is a protein coding gene on chromosome 22 (22q11.21). TANGO2 has only recently been...
-
Episode 29 - Endosalpingiosis Foundation, Inc.
In this episode of CoRDS Cast, Polly sits down with Tabitha Frank, who is the founder of the Endosalpingiosis Foundation, Inc. After Tabitha was told that she had endometriosis and would never be able to have a child, she got pregnant with her son. Complications started to arise after her…
more -
Episode 28 - The Smith-Kingsmore Syndrome Foundation
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 MTOR gene (mechanistic target of rapamycin), found at chromosome location…
more -
Episode 27 - Chloe Barnes Advisory Council on Rare Diseases
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 Assistant and also is diagnosed with a rare condition called ectodermal…
more -
Episode 26 - Soft Bones, Inc.
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 or HPP is a metabolic bone condition that most often affects the development of bones and teeth. The signs and symptoms vary widely, with mild cases...
-
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...
-
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…
more -
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…
more -
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...
-
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...
-
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...
-
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...
-
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...
-
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…
more -
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...
-
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…
more -
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…
more -
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…
more -
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…
more -
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...
-
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...
-
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…
more -
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...
-
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…
more -
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...
-
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!
-
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…
more -
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…
more -
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…
more
We're indexing this podcast's transcripts for the first time — this can take a minute or two. We'll show results as soon as they're ready.
No matches for "" in this podcast's transcripts.
No topics indexed yet for this podcast.
Loading reviews...
ABOUT THIS SHOW
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.
HOSTED BY
Sanford CoRDS
Loading similar podcasts...
Frequently Asked Questions
How many episodes does CoRDS Cast have?
CoRDS Cast currently has 53 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is CoRDS Cast 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...
How often does CoRDS Cast release new episodes?
CoRDS Cast has 53 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to CoRDS Cast?
You can listen to CoRDS Cast on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts CoRDS Cast?
CoRDS Cast is created and hosted by Sanford CoRDS.
URL copied to clipboard!