I'm Climbing Mt. Kilimanjaro for Team Telomere

Every year I do something I never thought I would do. My brother suggested a Mt. Kilimanjaro climb and that idea sparked passion in me. This climb gives me the opportunity to do something I never thought I would do, it gives me the chance to spend 9 days on a mountain with my brother who I love with all my heart, and as if those things were not fabulous enough, it gives me a chance to raise funds for a life-saving cause.

I want my personal investment in this climb to also be a financial investment in securing better health care for people with Telomere Biology Disorders.

This cause is important to me because when I found out someone I love has a Telomere Biology Disorder, one of the desperately heart-breaking realities is that, despite having one of the best medical teams in the world, there was simply nothing more that could be done for the patient.

One of the doctors at CHOP said to me “We are at the edge of science, searching and learning more everyday but for now, I cannot give you a clear answer about how this will unfold or about the treatment options.” I appreciated her honesty. It scared me and it broke my heart, but I appreciated it. At that moment I knew I would work to make sure other people wouldn't have to hear that.

There have been great advances and people with TBD now have more options but we are nowhere near where we can be. My loved one is doing well but too many people with TBDs are not.

While volunteering to raise awareness about TBDs, I got to know patients like Julian and his mom. I saw how valiantly this sweet boy fought for his life, and how much joy and love he gave his family and all those around him. It was devastating to all who knew him, especially his family, when he died.

The future I hope to see for people with Telomere Biology Disorders ensures the brave efforts of patients, families, caretakers, and care teams can result in recovery and survivorship.

The money we raise will help propel advances in gene therapies to correct genetic mutations, better treatments to repair telomeres or halt telomere deterioration, and better options for solid organ and bone marrow transplants for people with TBDs. All this will translate to doctors having more tools to help, and to people with TBDs having better and better shots at survivorship.

My climb is dedicated to Julian Morales. Join me in supporting the Team Telomere community as I put one foot in front of the other on a steep climb representative of the mountains TBD patients and families face. Together, we can climb toward a cure.

With love,

Peggy