2022 Disney Marathon Weekend

Dave, Ashley, Emmalynn, Kate
Dave, Ashley, Emmalynn, Kate

Team Emmalynn

Walt Disney World Marathon Weekend, HERE WE COME AGAIN!


Hey! We're the Liufaus and we're excited to have you join us at Disney World in 2022. Your decision to join in the fight against A-T means the world to our family – and we know you won’t regret being a part of our team!

Emmy is now 8 years old and is in 3rd grade. She has difficulties getting around on her own and usually relies on holding our hands to stay upright and forward moving. She struggles with basic tasks like getting dressed, using silverware and writing utensils, walking up and down stairs, and even sitting upright for long periods of time. Because A-T attacks the entire body, everything requiring the use of muscle is affected. From eye tracking to swallowing, standing up to sitting still; Emmy has to consciously put forth effort to control her body in ways that the average person rarely thinks twice about.

Emmy is very soft-spoken but equally big-hearted! She is our donut-loving, Barbie-playing, girly-girl who loves to play with friends, go shopping, and travel to visit family. She’s much like other girls her age but she’s stuck in a body that doesn’t work all that well.  A-T is a complex, multi-faceted disease and, unfortunately, there is still a lot to be learned about it. Due to its rarity, there isn’t much government funding being allocated to study potential cures. We have, however, been working closely with the A-T Children’s Project (atcp.org) for seven years now - they are one of the very few non-profit organizations in the world working hard to unite affected families, find life-improving therapies, and fund the much-needed medical research to find a cure specifically for ataxia-telangiectasia. In addition to coordinating and supporting biomedical research and scientific conferences, the A-T Children’s Project also funds a clinical center for A-T patients at Johns Hopkins Hospital in Baltimore. 


We received Emmy’s diagnosis shortly after her first birthday and it came as a complete shock to have someone tell us that our seemingly normal, happy toddler has a serious genetic disease with no cure. But thanks to the love, support, and generosity of family, friends, and people like you, we continue to have hope that life-improving advances will be made and hopefully a cure will be found in the near future for our amazing daughter and the hundreds of other children affected by this miserable disease.

We refuse to give up and are committed to doing everything in our power to assist those who are searching for a cure. This is our 5th year running with the A-T CureTeam at Disney World and we are super excited to meet new friends and make more memories. Please join our efforts and help us find a cure by clicking the "Join" button now!
 

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.  

 
View More