Team Telomere

Dyskeratosis Congenita Team Telomere Giving Page
How did we start?

Team Telomere 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 $200,000 in research.

What did $200,000 fund?

The short answer is, hope. Every dollar that you donate is a dollar closer to finding answers to this complicated and debilitating disease. We are proud of the research that was funded by your support! Dr. Jim Wilson, Director of the Orphan Disease Center once said “these grants go to fund the best scientists in the world.” And we couldn’t agree more! Meet your funded scientist:

*2016 $50,000
Dr. Suneet Agarwal, Boston Childrens
Opened a multi-center, prospective, minimal intensity BMT trial for dyskeratosis congenita

*2017 $50,000
Dr. Brad Johnson and Dr. Chris Lengner, University of Pennsylvania
Pharmacologic rescue of telomere defects in dyskeratosis congenita

*2018 $100,000
Dr. Suneet Agarwal, Boston Childrens
Small molecule modulators of telomerase as novel treatments for dyskeratosis congenita

To read in more detail visit:
https://teamtelomere.org/resources/#physresources

What is Team Telomere?

Team Telomere 501(c)3 is an international community for TBDs.
We support all individuals with TBD no matter where they are in the world.

Our mission is to provide information and support services to families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.

To learn more about our amazing community visit:
https://teamtelomere.org/

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josh and ryan

Josh and Ryan

bruce and lisa

Bruce and Lisa

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Chicago Group