Susan Insley

Susan Insley's Fundraiser

Telomere Testing Is Key image

Telomere Testing Is Key

Join me in supporting real change

Share:

$3,600 towards $100,000

In retrospect, we can see that my husband, Tom, was showing signs of Telomere Biology Disorders (TBD) as early as his 20s, marked by premature graying of his hair. Despite facing a myriad of health issues, it was only nine months before his untimely passing that we discovered that he had short telomeres and two inherited, genetic mutations. Tom had textbook TBD symptoms throughout his life. Complications from Pulmonary Fibrosis and Bone Marrow Failure ultimately took his life on October 12, 2022. Our two children have inherited TBDs and thankfully, are currently healthy.

The loss of Tom has been a heart-wrenching journey, one fraught with the challenges of navigating a fragmented healthcare system, confronting the barriers of medical specialization that hinder holistic solutions, and the repeated echo of ‘idiopathic’ as a diagnosis. It’s a journey that has left us devastated, but not defeated.

Now, more than ever, we feel an urgent need to raise awareness for earlier telomere testing, to establish quicker connections from diagnosis to treatment, and to secure funding for research that will lead us to better treatments and, one day, a cure.

Team Telomere stands as a beacon of hope in this fight, leading the charge in patient advocacy and research.

I urge you to lend your support to this organization, an organization that shares my unwavering commitment to finding answers.

Together, we can turn the tide against TBDs. Your support could make all the difference.

With love and gratitude,

Susan