Help us accelerate Telomere Biology Disorder research!

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 $520,000 in research.

PLEASE READ!!

** I am asking you all to please dig deep for a small donation for Team Telomere please no mayyer how small every dollar/cent counts 🙏

As many of you reading this know I have been diagnosed with Telomere Biology Disorder (Dyskeratosis congenita) a rare genetic condition that causes bone marrow failure and also affects many parts of the body including the organs it has affected my lungs and caused pulmonary fibrosis which is considered a terminal illness with no cure it is a progressive lung disease which causes irreversible scaring of the lungs a condition both my Mammy and brother died from amongst many other medical conditions this illness had inflicted on them both I enrolled in a clinical trial in the NIH in America to do my best to help and be involved in research to hopefully eventually find a cure or at least a treatment available to us while of course remaining hopeful that it would of course benefit me as I am a Mammy to 3 children and a wife and daughter and life is precious, I know how much I want to be able to give back to team telomere as they have been a massive support to me getting me into the system here in Ireland as I had no way of knowing how to get in the door and with the waiting lists I didn't have time to wait so I will do all I can to help raise awareness and fundraise to be able to give back to them in some small way because with out them and there knowledge i would still be left in the dark, they also helped organise to fly myself and my daughter out to camp sunshine in portland maine in America for a massive opportunity to meet families and Doctor's who are full of knowledge in this Rare condition and meet others on the same journey to be able to interact and have a conversation with these people with out being judged or feeling the odd one out was so heartwarming to see the encouragement and support that is offered from this group is amazing and I am honoured to be a part of the team as the Irish ambassador.