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/
https://twitter.com/OnceUponAGene
https://www.instagram.com/onceuponagene.podcast/?hl=en
Built Ford Tough Facebook Group
https://www.facebook.com/groups/1877643259173346/
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Rare Friends Forever - Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson
Effisode - Inclusion Revolution
Rare Disease Families Have Plenty of Hope - What They Need is Help. Transforming Drug Development w/ NF2 Biosolutions, Nicole Henwood & Vibe Bio, Alok Tayi
Together We Can Cure Single-Gene Disorders Starting with PGAP3 - Moonshot - An Ambitious and Innovative Project with Geri and Zach Landman
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A Rare Mama Bear - Being a Single Parent and Adopting a Rare Disease Child with Epidermolysis Bullosa
Effisode - Global Genes RARE Disease Patient Advocacy Summit
Picking the Brain of a Rare Disease Dad - With CTNNB1 Dadvocate - Casey Parks
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