Krabbe Disease with Kasey Feldt

ONCE UPON A GENE - EPISODE 222 Krabbe Disease with Kasey Feldt Kasey Feldt is the mom of two- one year old Lukas and Dawson, who passed away from Krabbe disease. Kasey has become a passionate and unstoppable advocate, not only advocating for Krabbe disease, but also the newborn screening system so kids have a better chance at early detection.   EPISODE HIGHLIGHTS Can you tell us about yourself and your rare disease journey? My son Dawson was diagnosed with Krabbe disease. He was born a healthy baby boy and at about three months old, my husband and I noticed symptoms such as lack of head control, eating difficulties and irritability. We began testing and at about six months old, we received a diagnosis of Krabbe disease, a terminal diagnosis. We kept Dawson comfortable for about eight months following his diagnosis and he passed away at fifteen months old.  What is your advice for someone interested in policy advocacy? Search and find out who your local lawmakers are, especially your Delegate. The EveryLife Foundation is a good source for information on policy advocacy and can help you to be successful. Also, gather your disease community because the more the merrier.  How has advocating for Krabbe disease and newborn screening impacted you? It became my passion to advocate for Krabbe disease, but also rare disease in general. When Dawson passed, I knew I wanted to do this work as a career. I started working for Sisters' Hope Foundation and it's been an amazing experience and honor to Dawson.  LINKS AND RESOURCES MENTIONED ONCE UPON A GENE - EPISODE 214 - A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari https://effieparks.com/podcast/episode-214-the-power-of-brain-and-tissue-donation-in-rare-disease-research ONCE UPON A GENE - Episode 111 - The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger https://effieparks.com/podcast/episode-111-elisa-seeger-ald-alliance ONCE UPON A GENE - Episode 128 - Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing https://effieparks.com/podcast/episode-128-heidi-edwards EveryLife Foundation https://everylifefoundation.org/ KrabbeConnect https://krabbeconnect.org/ Hunter's Hope https://www.huntershope.org/ Krabbe Families Facebook Group https://www.facebook.com/groups/krabbefamilies/ Librarey https://www.librarey.com/ Sisters' Hope Foundation https://sistershopefoundation.org/ World Orphan Drug 2024 https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/ GeneDX https://www.genedx.com/ Beyond The Diagnosis https://www.beyondthediagnosis.org/ CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

Fecha de Publicación: 21 de marzo de 2024

Duración: 29 min