2021 Team Telomere Million Dollar Bike Ride Grant Project Title: Targeting shelterin in telomere diseases Principal Investigator: Suneet Agarwal, MD, PhD, Boston Children’s Hospital Amount Awarded: $65,445 Lay summary: Dyskeratosis congenita (DC) is one of a spectrum...
Team Telomere’s Honorees for 2022 Excellence in Medicine: Dr. Jakub Tolar, University of Minnesota Excellence in Community: Bruce Friedman, Pennsylvania Executive Director’s Choice: Haley Gonzalez, Minnesota Team Telomere’s Honorees for 2019...
My name is Elizabeth, and I am Alexander’s momma, and Robert is his daddy. Alexander turned seven July 18, 2007, and has the Hoyeraal Hreidarsson (HH) variant of DC. He is also severely delayed from being oxygen deprived in utero (midwife failed to diagnosis placental...
Alexander was diagnosed with DC in November of 2005. With the grace of god Alex was diagnosed fairly quickly because his doctor had seen DC before. Alex was immediately started on Anadrol , this drug worked well for about three years when it suddenly stopped working...
Hello. My name is Becky and I have a 6-year-old son names Jesse. We were told in 2005 that he had DC. The signs started when he was about 1 ½ . We are from a really small town and no one here had answers to questions. We had a sick child and no doctor could find out...
