We have partnered with Penn’s Orphan Disease Center since 2014 to excel our ability to fund quality science for Telomere Biology Disorders. To date we have raised over $520,000 for TBD research. Our goal for this year is to raise $40,000 that will be matched dollar for dollar by the Orphan Disease Center.
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 $450,000 in research.
Start a Fundraiser
We want to help you be an active part of Team Telomere. Our newly designed fundraising page is user-friendly and allows you to create your team and raise funds virtually from anywhere in the world!
Inspire yourself to set up your fundraising campaigns from peloton rides, virtual yoga classes, 5K runs, and much more! Create a unique team page in minutes, ask for donations, and share with family and friends on social media to help raise funds for research!
We ask our community to rally their friends, family, and networks to support our work. Creating a fundraiser for Team Telomere will help our community move forward with our mission, and you’ll help your friends feel good about doing good. Starting a fundraiser is easy to do, and it’s fun. We’ll even give you all the tools you need to make a difference.
2023 Team Telomere Million Dollar Bike Ride Grant
Project Title: Nucleoside therapy for telomere diseases
Principal Investigator: Suneet Agarwal, MD, PhD, Boston Children’s Hospital
Amount Awarded: $63,000.00
Lay Summary: Telomere biology disorders (TBDs) are a spectrum of diseases characterized by life-threatening complications including bone marrow failure, liver and lung disease. Tissue and organ transplantation remain the primary treatments, but cures that address the underlying problem and restore telomere length to improve symptoms throughout the body are lacking. We recently discovered that molecules called nucleosides can increase telomere length in human cells, including those from patients with TBDs. This is exciting because nucleosides have already been used in children with another rare disease, and appear to be safe and effective for that disease. In this proposal, we will now rigorously test whether these same nucleosides can effectively increase telomere length in human stem cells, both in the dish and in animal models. If successful, these experiments will provide critical results that will help take nucleosides into clinical trials for patients with TBDs.
2022 Team Telomere Million Dollar Bike Ride Grant
Project Title: Using TERT variant-to-function analysis to define cryptic telomere biology disorders in sporadic cancers
Principal Investigator: Coleman Lindsley, MD, PhD, Dana-Farber Cancer Institute
Amount Awarded: $62,528
Lay Summary: Impaired telomere maintenance is linked to development of cancer. Inherited mutations affecting telomerase cause short telomeres in all tissues and an increased risk of specific cancers. The goal of this proposal is to define the spectrum and functional impact of inherited TERT mutations in adults with cancer and analyze associations with clinical outcomes. To achieve this goal, we have assembled a cohort of 40,000 adult patients with various cancers, will identify TERT variants in existing DNA sequencing data, and perform comprehensive functional interrogation of cancer-associated TERT variants to define their effects on telomerase function.
In six years, the MDBR’s 30+ teams have raised over $10 million to fund rare disease research grants. These research grants have had a huge impact on our Team Telomere Community. Keep reading to learn about past research grants.