Million Dollar Bike Ride - Dyskeratosis Congenita Fund
Team Telomere MDBR Grant

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/
Quick facts about what you are supporting
Being affected by such a rare disease can feel isolating. That's where events like this make all the difference to the individual and their family.
Your support lets them know they are never alone.

Here are some quick facts about TBDs:
  • Dyskeratosis Congenita is a telomere biology disorder
  • TBDs are a rare disease
  • There are currently 13 identified genes
  • DKC1, TERC, TERT, TINF2, NHP2, NOP10, TCAB1, CTC1, RTEL1, ACD, PARN, STN1, NAF1
  • Mutations in telomere biology genes cause pulmonary fibrosis
  • 80% of TBD individuals experience bone marrow failure
  • TBD individuals are at a higher risk for several forms of cancer
  • There is currently no cure
Donation messages
I wish to donate in honour of Clark Hundal. A beautiful little boy battling with this disease every day. He is a true warrior and is much loved by everyone. Thank you. --Ms. KellyMarie McClintock
To all our Camp Sunshine friends! --Katie and Andrew Lobasso
Donated in honour our gorgeous grandson, Grayson Little who is our little champion battling this disorder in Australia. --Grayson Little
In honor of the Friedman Family --Ms. Felicia DeRosa
Well wishes for Kaitlin --Kaitlin Dillon
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Fundraising goal $50,000.00
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  Matty, Massachusetts  
Recent donations (32 donations)
Name DescendingX Amount
Ms. KellyMarie McClintock
Katie and Andrew Lobasso $50.00
Grayson Little $100.00
Kaitlin Dillon $50.00
Kathy Rubera $25.00
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Recent donations
Top donors (32 donations)
Gabby Stephens This amount includes donations indented below $1475.00
   Cox family
Peggy Rios $1000.00
Mr. Bruce Friedman This amount includes donations indented below $900.00
   Anonymous
   Ms. Janet Vermeil
   Charline and Robert Russo    $250.00
   Annemarie Glass
   Irwin & Barbara Brownstein    $50.00
Kaitlin Dillon $500.00
Charline and Robert Russo $250.00
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delrossi@upenn.edu | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser