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/
Rare Disease Dad Chronicles - From Stay-At-Home Fatherhood to My Mejo Co-Founder A Journey Through Costello Syndrome and Parenthood Challenges with Dadvocate - Ryan Sheedy
Effisode - Summer Camp for Medically Complex Kids
A Rare Collection - Schools Out for the Summer
Anecdotes From a Rare Disease Dad of an Adult Son with NR4A2 with Joe Henry
A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber
Claudia Gonzaga Jauregui
From the Rare Disease Bunker to Many More Birthdays - A Tale of a Gene Therapy that Cures her Daughter with AADC Deficiency - The First Spanish Patient - with Carolina Moreno
A Rare Collection - A Father's Day Special - Amidst the Storm
SCN8A Rare Mom - The Inch Stone Project and DEE-P Connections - Creating Better Tools, Resources and Research for the Most Severely Affected Families with Gabi Conecker
Developing Personalized Therapeutics for Ultra Rare Patients with La Jolla Labs CEO Jeff Milton
How Being a Mom to Twins with a Rare and Undiagnosed Condition Has Shaped Rare Mom, Scientist and Co-Founder of the MAST Genes Research Foundation with Dr. Kim Aldinger
Effisode - Are We The Actors
A Rare Collection - Keep Digging
The Tréxō Robot and the Many Benefits of this Technology for Kids with Disabilities with the Founder and CEO Manmeet Maggu
The Outlet - How Chris Anselmo Used Writing to Connect with Other Rare Disease Families and Come to Terms with His Own Diagnosis of Limb-Girdle Muscular Dystrophy
A Rare Collection - Wishing Well
Effisode - The Ultimate Rare Disease Resource Guide
Doctor and Rare Disease Dad Is On A Mission to Accelerate Research and Drug Development Efforts for His Childs KCNT1 Epilepsy with Dadvocate Dr. Justin West
Helping Undiagnosed Patients Who Experience Symptoms of Rare Diseases Find Answers with Free Genetic Testing in a Matter of Weeks with Probably Genetic CEO Lukas Lange
Effisode - There's No Crying In Baseball
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