Tim Kiene's Fundraiser
Riding in memory of my Uncle Bob, Uncle Rich and my Grandmother - Help us accelerate Telomere Biology Disorder research!
Be part of finding causes, effective treatments, and a path towards a cure
A supporter of Tim Kiene
I donated in support of this campaign.
A supporter of Tim Kiene
I donated in support of this campaign.
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.
We have partnered with Penn’s Orphan Disease Center since 2014 to excel our ability to fund quality science for Telomere Biology Disorders. Our goal this year is to raise $40,000 that will be matched dollar for dollar by the Orphan Disease Center.
Please consider donating today!