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/
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
Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael
Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados
Effisode - Wheelchairs and Walls
A Rare Collection - Exhausted and Energized
Real Rare Mama Shop Talk - Deciding What We Share About Our Lives and Recognizing How Far We've Come with Each Passing Year with Alyssa Poskarbiewicz CHARGE Syndrome Mom
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Every Patient Matters - Discovering, Developing, and Providing Experimental ASO Treatments to Nano-Rare Patients for Free with n-Lorem Founder and CEO Stan Crooke
Effisode - Rare Disease Day Events
A Rare Collection - To the Moon and Back
Honoring a Husbands Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter
Effisode - Barbara Is Real
From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts
Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella
Effisode - Seizures Are Stupid
A Rare Collection - New Beginnings
Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño
Effisode - The Friendship Circle
Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel
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