My brother and me! Rare, a bit of CF & COTA!

Living With Cystic Fibrosis

In this podcast you'll meet my brother Noah Teicher, and my nephew Colton Teicher. I have two younger brothers, but my brother Noah (the middle child) has two boys who had a rare disease. And we talk about their journey from having a rare disease to being cured. Noah and Colton talk about their journey with the Children’s Organ Transplant Association (COTA). Rick Lofgren has been the non profits president for more than two decades. Rick helps raise millions each year to support families with the cost for transplantation. In addition to all he does, Rick is married with kids of his own.

I learned about Rick, from my brother. My nephews Colton and Caden had a rare disease called Chronic Granulomatous Disease (CGD). CGD is passed down through the mother, only to sons, not daughters. CGD causes frequent and life-threatening infections because their immune system can’t fight off certain harmful bacteria and fungi. My nephew’s mother is the carrier. Women do are only carriers of the genetic disease, only boys have the genetic diesase. The great news: there is a cure. Both my nephews were cured.

About my brother and nephew. Noah works for Abbott Laboratories as a district manager across several states and has three kids, and a stepson wife his wife Lisa. My nephew Colton is a Patient Care Coordinator at a specialty Pharmacy in Detroit. Colton is an advocate for his disease and the rare community.

This is a reminder that it’s good to share information because after my brother told me about COTA, I connected with Rick at COTA. The Bonnell Foundation and COTA are now partners helping people who need funds for transplants, and all that it entails.

Colton will be post transplant for three years on September 3rd, 2021

Caden will be post transplant on December 16th, 2022

To connect with Colton: [e-mail]

To connect with Noah: [e-mail]

For information about COTA: https://cota.org/get-started/

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