Donate Now to Help Find a Cure for A-T!
I am joining the A-T CureTeam as we take over Walt Disney World in January 2022. Click on the Donate button now and you can help find a cure for A-T. Thank you for all of the support!
WHAT IS A-T?
Imagine a disease that combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies, and cancer. 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.
Tori passed away July 5th 2018 at age 31 from complications of Leukemia , related to AT. She declined chemotherapy and continued to live her life on her terms. She and her partner Brandon were able to travel to Disney World in October 2017 for their commitment ceremony and “honeymoon”. This trip was a lifelong dream come true for both Tori and Brandon. Since 1994 Tori had participated in multiple research studies through the A-T Clinical Center at John’s Hopkins Hospital. She allowed researchers to study her eye movements, take her blood and spinal fluid and trialed medications to promote treatment or a cure for A-T. She participated in “A Very Special Evening” hosted by Playwright Eric Weinberger in New York City for 15 years, and “ran” twice at Disney for A-T during the Marathon Weekends. She was my Warrior Princess and up for any challenge life threw at her. Tori was a worldwide traveler, swam with dolphins, snorkeled, surfed, zip lined, rode horses and loved with her entire heart and soul. Even after her death she continues to contribute to A-T research and would be thrilled to know about the great strides being made to find a cure for A-T.
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