Susan Insley's Fundraiser
Telomere Testing Is Key
Join me in supporting real change
Heidi Egelston
"Proud of you for all the work you are doing to raise awareness!"
$100
A supporter of Susan Insley
I donated in support of this campaign.
$75
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Jennifer & John Feri
"In celebration of Tom and in support of Susan's dedication to making a difference! "
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Lori Castillo Martinez
"Cheers to Tom always! Hope this helps just a small bit towards a cure! "
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Jeanne Seeds
"Miss you Tom "
$100
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Polly Mahoney
"In honor of Tom Insley 💛"
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Sandy Cold
"In memory of sweet wonderful Tom Insley"
$500
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Will Miller
I donated in support of this campaign.
$100
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Meghan McCarthy
"In celebration on what would have been Tom’s Birthday ❤️"
$500
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Amy Hayden
I donated in support of this campaign.
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