Help fund research, provide support, and make an impact for those with Telomere Biology Disorders!

As many of you know, I was diagnosed with Dyskeratosis Congenita at the age of 29, after suffering from “idiopathic” aplastic anemia for many years. Thanks to a diligent fellow at Henry Ford Hospital in Detroit, I was finally given a name for my disease. I hate the word journey…but my journey initially began with bone marrow failure in 2020/2021 after a viral infection that my blood counts would not recover from… this led to my first stem cell transplant in January 2021, and then spiraled downhill for awhile after starting with CMV reactivation (the bane of my existence) then graft failure 😭😭 leading to a second transplant in April 2021…. then sepsis, freaking CMV again😖, EBV reactivation, sepsis another 2 times, multifocal pneumonia, a burst ear drum, and finally bilateral hip replacements and a partial shoulder replacement last winter. I continue to have a variety of specialist appointments to monitor for any additional bumps in the road that may arise from this disorder. I don’t regret or feel discouraged by all that has happened, it is life, and you cannot prevent the cards you are dealt, you can only learn to be grateful for each day and continually persevere.

This year I am fundraising to help propel research, provide patient/ family support, and work towards one day finding a cure for this devastating disease. Please consider joining me to work towards real change, and to provide a spark of goodness in what can sometimes feel like a heavy world, making a difference for those suffering from and the caregivers/family member dealing with the burnout and stress that goes along with this condition.

Help us see a world where every person impacted by Telomere Biology Disorders – including the affected individuals, caregivers, researchers, and clinicians – has accessible care, community, and resources, with the goal of positively changing the course of this disease, driving toward improved treatments and ultimately one day a cure.

Thank you for taking the time to read my story, and about this organization that has made such a difference in my life. Many of you have donated in the past, and I’m forever grateful for your contribution!

If you feel moved to make a donation, please do so - if not, please help me to further advocate by spreading awareness about Team Telomere and all the good they do in the rare disease community ♥️♥️♥️

One small donation will go a long way to helping me meet my goal for Team Telomere