The Bafunno twins (Danielle and Michelle) are at it again! We have both been running road races in honor of our nephew, Max, son of Beth Fiest Boryenace and Adam Boryenace. For each race we are matching our entry-fee as a donation to the A-T Children's Project.
ATCP funds research and development for a rare genetic disease called Ataxia-telangiectasia, also known as "A-T". Imagine a disease that combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies, and cancer. A-T is aggressive, degenerative, and terminal. Children with A-T are usually confined to wheelchairs by age 10 and often do not survive their teens. Because A-T is a multi-system disease, scientists believe that A-T research will help more prevalent diseases such as Alzheimer’s, Parkinson’s, AIDS, and cancer.
Our nephew, Max, was formally diagnosed with A-T in October 2012, after a year of medical exams, evaluations and tests. Max is a brilliant and savvy little 5 year old who inspires and delights everyone who is fortunate enough to know him. Max’s teachers and caregivers make frequent comments about the smiles he brings to their faces and how he is remarkably smart. Right now, Max has difficulty with physical tasks we all take for granted, like walking or sitting. He has learned how to fall with grace and protect himself in the process. While Max can get around now, this capability will diminish over time and he will likely end up wheel chair bound. While Max will maintain his sense of humor and intelligence, he’ll have a hard time living a “normal” life due to all of the symptoms associated with A-T. As he progresses through life, he will likely need full-time care. Our only hope for Max, due to the rarity of this disease, is raising awareness and supporting research to find a cure and develop therapy and treatment for it.
You can find more information at http://en.wikipedia.org/wiki/Ataxia_telangiectasia, which is updated by the A-T Clinical Center at Johns Hopkins Hospital (funded by ATCP).
ATCP is a non-profit organization, and your donation will go directly to research and raising awareness. Donations to ATCP are tax deductible.
You can make your donation at the top of this page (click the Donate Now button) and keep track of our progress!
Thank you again for all of your love and support! We hope 2016 is a year of blessings and good health for you & your loved ones!