|Abby and Amelia - my nieces|
To My Blog Readers:
I’m asking for you help. Last week I launched Will’s Quest – my commitment to run the Grand Slam of Ultra running while raising money to raise awareness and find a cure for a rare disease my nieces suffer from. It’s called Tuberous Sclerosis, or TS for short.
If you don’t already know about TS, here is a snapshot:
It’s a genetic disease that affects 50,000 people in the United States, and even more around the world. TS typically means having noncancerous tumors in the major organs of your body – your brain, skin, eyes, lungs and kidneys. Tumors that form in the brain are the greatest challenge to quality of life and can cause uncontrollable seizures, autism, epilepsy, developmental delay, intellectual disability and depression. TS is also a progressive disease, which means that it can become more severe later in life.
Here is the thing. Running gives so much to us. More than we runners can really imagine. Once in a while it is important that we give back. I’m asking you to help me with whatever contribution you can make. My goal is to raise $15,000 from as many donors as possible. It’s not the amount that matters, it’s the thought that you took the time and made the effort. Click here to watch Julianne Moore Video describing TS. Click here to donate.
Lets help these kids and adults. The good news is research has uncovered new medications that can control the growth of these tumors.