 Save the Cord Foundation and WellSky are proud to welcome Dr. Paul Orchard (University of Minnesota) and the family of Lyla Edgington as our featured speakers for the next edition of Share the Science on Tuesday, December 19th at 2pm US Eastern Time / 11am US Pacific Time. RECORDING NOW AVAILABLE Join us to hear Dr. Orchard and Lyla's family to discuss how Lyla was successfully treated for Hurler Syndrome (MPS Type 1) using a cord blood transplant. Share the Science is a free webinar series focused on the cord blood industry and the latest research in this field. As always, we invite both health professionals and the general public to join us for this unique online educational series. Learn more about this exciting educational series here. Hope for treatment of genetic diseases like Hurler Syndrome?Cord blood has been used for more than 30 years. Many people know it as an alternative or even superior choice for stem cell transplants to treat many forms of cancer including leukemia, lymphoma, etc. However, cord blood has also shown tremendous potential in the treatment of certain genetic diseases, such as Hurler Syndrome (MPS Type 1). On April 4, 2016, at seven months old, Lyla Rose Edgington was diagnosed at Phoenix Children’s Hospital with a rare, progressive genetic disorder, Hurler syndrome. Hurler Syndrome is a progressive genetic disease. If you don’t treat it, it will gradually cause severe physical and mental damage. Lyla’s parents knew this and this is why timing was so crucial in her case. Her doctors said she needed a stem cell transplant and that cord blood would give her the best chances at overcoming this life-threatening genetic disorder. They were referred to Dr. Paul Orchard at the University of Minnesota who explained that transplants for MPS patients have greatly improved over the last several years. It was a race against the clock as the disease was constantly working against them, deteriorating brain cells. Luckily, a match was found and it was a perfect 6 out of 6 match! The transplant date was set for July 25th, 2016. Nearly seven years after receiving a successful cord blood stem cell transplant, Lyla and her parents want to spread awareness about the benefits of public cord blood donation. Join us for this inspirational and educational LIVE session featuring Dr. Paul Orchard and Lyla's parents! Together, they will help us to discover the potential of this valuable medical resource and open our eyes to possible new applications to treat genetic diseases with cord blood. SHARE THE SCIENCE with Dr. Paul Orchard University of Minnesota Medical Director of the Inherited Metabolic and Storage Disease Program and a Professor in the Department of Pediatrics, Division of Blood and Marrow Transplant & Cellular Therapy and family of Lyla Edgington Cord Blood Transplant Recipient for Hurler Syndrome "Cord Blood for Hurler Syndrome (MPS Type 1)" Free webinar. Open to the public. Tuesday, December 19th 2pm US Eastern Time / 11am US Pacific Time RECORDING NOW AVAILABLE About the speakers
We wish to thank Dr. Paul Orchard and the family of Lyla Edgington for volunteering their time to speak on Share the Science and sharing their valuable insight on the use of cord blood transplants in the treatment of certain genetic disorders such as Hurler Syndrome. We also wish to also thank our generous sponsor and partner for this event, WellSky Health, who continue to support cord blood education through our “Share the Science” series.
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March 2025
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