In Memory of Becky Bailey

We lost our dear Becky on July 13, 2023 as she awaited a lung transplant at the University of Pittsburgh Medical Center. Becky dreamed, acted, planned, and believed - living life to the fullest hosting wonderful gatherings and spoiling family and friends with spirited conversation and her renowned chocolate cake. There are no words to describe the depth of our heartbreak. She will be missed endlessly.

We believe, given more time, Becky’s diligence in understanding her disease partnered with her tenacious spirit would have inspired new and better treatments for other patients with Telomere Biology Disorder diagnoses. To honor her tenacity, we are requesting donations in Becky’s memory be made to Team Telomere, an international research and advocacy group determined to find better treatments and, ultimately, a cure. The staff of Team Telomere fought alongside Becky - providing resources, helping to coordinate care, and becoming active partners in helping get her bilateral lung transplant approval. She lost her battle before receiving the transplant.

As you may know, Becky and some of her family have a rare inherited genetic variant that causes short telomeres. This can impact multiple organ systems causing bone marrow disease, Pulmonary Fibrosis, and other diseases. Becky successfully fought this for more than 30 years until Pulmonary Fibrosis became her most critical issue. A good explanation about short telomeres and Telomere Biology Disorders (TBD) can be found on the main page of www.teamtelomere.org

A note from her Pulmonary Rehab medical team speaks volumes -
"Becky’s Pulmonary Rehab family has felt broken this week She always talked about how she had the absolute best family and support system. I knew how much we loved her but it has been beautiful to see how much her family loved her! Becky and I had a long talk the day before she left for Pittsburgh. Although she had so much determination and fight in her, she verbalized that she was fighting for a bigger cause…not only for her but for others after her. Yesterday I handed a patient with a new diagnosis of Pulmonary Fibrosis a handout of resources that Becky had researched and put together. Her kindness, sweetness, and perseverance will live on… our thoughts and prayers are with you all ”

Please help improve understanding and treatments for Telomere Biology Disorders with a gift to further research and support other families. Becky fought a persistent and valiant battle. Team Telomere will continue the fight in her honor.