Meet Nora Xu
What has your AS journey looked like?
It’s been a roller coaster. We had a fairly quick path to diagnosis at 11 months. We found out the day after Christmas, and I will never forget the shock at finding out from our geneticist she would never speak, get married or have her own kids. Not dissimilar to many AS families, the crushed dreams for the secrets she’d share with her sister, the funny stories she’d tell me about her friends, the person she would grow up to be…that knot at the pit of my stomach was what followed diagnosis.
How were you first introduced to FAST? Do you remember the first time you understood that there was hope for a cure? Tell us about it.
Luckily, I met some cool moms early in the diagnosis journey. They shared articles on the company FAST created GeneTx, and that it was going into clinical trials soon. I started to read about the different types of research FAST invested in, the renowned researchers they worked with, and the lengths this group will go to in order to find a cure quickly. It was enough to settle the knot in the pit of my stomach, and give me a sense of purpose - I can do something about my daughter’s future, that I could contribute to making her life easier, and enable her to be all that she can be
Why do you have hope for the future of AS?
We have already inspired so many to help us in bringing the mission of an AS cure to life. My hope go beyond whether or not a therapeutic can be real, and rather how treatment be optimized for every genotype, age and individual.