Help fund research into Telomere Biology Disorders

In June 2024, we received news I never imagined we would receive. Willow, at just 1 year old, was diagnosed with a very rare telomere biology disorder called Dyskeratosis Congenita (DC). Genetic testing found a variation in something called the TERT gene, and her telomeres were found to be significantly below the 1st percentile.

For those who don’t know what telomeres are, they are essentially the “shoe lace cap” at the end of chromosomes. When telomeres are shorter than expected, it either halts cell division or causes cellular death and leads to severe issues in high turnover tissues, issues such as pulmonary fibrosis, cirrhosis of the liver, bone marrow failure. People with telomere biology disorders are also at a higher risk of certain cancers. Symptoms present sooner and are more severe with each generation.

Unfortunately, very little is known about DC and other telomere biology disorders. At this time, there is no definitive cure. Treatment for these disorders focuses on monitoring for and treating complications of the disease with medications to stimulate bone marrow, supportive care with blood/platelet transfusions, and bone marrow/solid organ transplants.

This cause is very important to my family and I because Willow is the 3rd known generation to have this disorder. Our hope is that the money donated will help researchers find a cure before this disorder takes a significant hold on Willow’s health.

Join me in supporting real change. Help us find effective treatments and ultimately a cure for Telomere Biology Disorders for Team Telomere

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