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/
Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber
Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
Finding Strength In Every Step
Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin
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