Help us accelerate Telomere Biology Disorder research!

Our daughter, Kyndall was diagnosed with a Telomere Biology Disorder in 2019 right after she turned 5 years old. A visit to her pediatrician after we discovered a lot of unexplained bruising, led to the first of many, bone marrow biopsies. After about a year, she was in full blown bone marrow failure and received a bone marrow transplant in September of 2020. Her big sister, Kaitlynn was a perfect match and donated her stem cells. Kyndall's transplant was very successful with minimal complications thanks to research that had previously been done with other TBD patients.

Since then we have discovered that Kyndall never developed 7 of her permanent teeth. She has had oral surgery to remove the remaining baby teeth to allow room for the healthy adult teeth that she does have to grow in and spread out. She will likely need implants or other orthodontic work in the future.

Recently, Kyndall has been struggling with Gastrointestinal issues. We are currently working with specialists to continue exploring in hopes of finding the root cause. We are beyond grateful to he doctor's and researchers who we have had the pleasure of connecting with, thanks to Team Telomere and the resources made available to our family. This has allowed us to continue her care in our home community without the need to travel, at this point.

We continue to pray for a cure and for all of the important people who are working daily to learn more about TBD's, possible medications and procedures that will not only help our sweet girl but so many others who are affected by this disorder.

Team Telomere’s MDBR Team started as Team Josh’s DCO Riders 2015, in honor of Joshua Friedman. Josh passed away in 2011 from Dyskeratosis Congenita (DC), a telomere biology disorder. Josh lived a full and beautiful life and touched many people throughout. Josh’s lasting legacy is a gift to our community as his story has helped raise over $520,000 in research.