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
For Rilee Bjerke.GodsAngel. --Mr. Vance Moorman
In honor of Josh Friedman. --Kyle Bryant
In honor of Kaitlin Dillon and her courageous, inspiring and fierce battle to conquer this disease! --Kathy Rubera
In loving memory of Mathias. --Bryan and Julie Clark
For our brave grandson, Josh Clark. Love grandma and grandpa Shaffer --Clinton and Phyllis Shaffer
Next
Donate now!
Fundraising goal $50,000.00
If you have a video you'd like to include, please provide the link.
  Matty, Massachusetts  
Recent donations (146 donations)
Name DescendingX Amount
Kayla Hanson $50.00
Mr. Vance Moorman $200.00
Mr. Lee Bohs $100.00
Kyle Bryant
Kathy Rubera $25.00
Next
Recent donations
Top donors (146 donations)
Mrs. Jen Chaney This amount includes donations indented below
   Mrs. Jen Chaney    $5000.00
Mrs. Jen Chaney $5000.00
Mr. Bruce Friedman This amount includes donations indented below $1780.00
   The Catlin Family    $50.00
   Anonymous
   Jo Anne and Phillip Glass
   The McLaughlin Family    $100.00
   Adam & Melissa Ross    $100.00
   Margret Hagar
   John and Jules Tisera    $250.00
   Mr. Timothy Greim    $100.00
   Anonymous
   Ms. Janet Vermeil
   Charline and Robert Russo    $250.00
   Annemarie Glass
   Irwin & Barbara Brownstein    $50.00
Gabby Stephens This amount includes donations indented below $1600.00
   Belinda
    Karen Stade    $20.00
   Renee LeNoel    $100.00
   Cox family
The Marcone Family This amount includes donations indented below $1275.00
   Anonymous
   The Cusack Family    $50.00
   Jack & Kathie McDonough    $250.00
   O'Leary Family    $50.00
   Carol & Bill Duggan
   The Paschal Family    $200.00
   Amy Killeen and Tom Birmingham    $100.00
   Mrs. Jeanne Murphy
   Ed & Christine Martin    $100.00
   Tommy Vaughan and Vaughan Family
   The Lehane Family    $100.00
   The Ciechanowskis    $100.00
   Dan Mark    $25.00
Next
Donate!

Share this page with your friends
Post fundraising progress

delrossi@upenn.edu | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser