Accelerate Telomere Biology Disorder Research

Why I am riding -

My Uncle Bob and Uncle Rich were more like brothers to me. They were diagnosed with Dyskeratosis Congenita in their teens, but were unaware of what was ahead for them. They both underwent stem cell transplants in early 2000 and passed away in their mid-30's of pulmonary fibrosis. Like my uncles, my grandmother also inherited the disease and she also passed away of pulmonary fibrosis. My family faced the disease with little or no information and no support. Most doctors - even today - have never heard of the disease.

Team Telomere's mission is to empower individuals worldwide impacted by Telomere Biology Disorders with information and support services, to advance improved diagnosis through education and advocacy, and to accelerate the medical and scientific community’s research in finding causes, effective treatments, and a path towards a cure.

Team Telomere is part of the Million Dollar Bike Ride through Penn Medicine’s Orphan Disease Center. To date, they have raised over $580,000 for TBD research through this effort. From supporting TBD-specific clinical trials, investigating potential treatments, and better understanding the TBD disease process, the TBD field has been shaped by funding this impactful research.

I am riding for research this June to raise money for vital Telomere Biology Disorder (TBD) research. Team Telomere is part of the Million Dollar Bike Ride through Penn Medicine’s Orphan Disease Center, where every dollar raised is matched to fund a pilot research grant.

Our goal for this year is to raise $40,000 to directly fund a pilot research grant.

Will you help me in accelerating TBD research and reaching my fundraising goal with a donation today?