Sunday, August 24, 2008

Race 4 Ty

This post is in support of Jennifer and her inspiration, Ty, as she prepares for the Ironman triathlon competition in Hawaii in October (above, Jennifer, Ty & his mom, Karen). Ty is 11 years old and lives every moment to the fullest! He also has Niemann-Pick Disease, a rare neurological disease.

Please visit Race 4 Ty to read more. Whether it is visits to the site, awareness of the disease, or fund donations, your support will make a difference to Ty and other young people living with this rare disease. Jennifer explains more about NPD here in her post Niemann-Pick Disease Awareness Month.

Her goal is to create an awareness of this disease by raising $10,000 for the National Niemann-Pick Disease Foundation to put toward funding a post-doctoral fellowship researching Niemann-Pick type C disease.

When I first moved to the northwest, I received a call from my dear great-aunt. She wanted me to contact her granddaughter who also lived in the area. That's when I first met Karen, Gene and their young son (at that time) Tim. Before long, Ty joined the family, too. Ahhh, the plays and quiddich games we've attended with this family! (I'll look for pictures to post from the one quiddich game we survived.)

Adventures and movie making where right up young Ty's alley. As a grade-schooler, though, a series of health issues eventually lead to the NPD diagnosis. The family adventures continue, but also a tireless quest for NPD research, supportive resources for families and doctors and a cure. And thus, an inspiration to be found in Ty, his family and the supporting community far and near.

Thank you, Jennifer, and all who read this, for furthering Ty's education and research mission.



Frankie @ Veg Plot said...

I had never heard of NPD and cannot imagine what it must be like to have a child diagnosed when there is no cure. Best of luck with raising awareness and support. Ty sounds like a great little boy!

jen said...

I ran my first 5K in June for Niemann Picks her in PA. It was the Race for Adam. Such a sad sad disease. I'm glad to see other endeavors happening to support research since it's such a rare disease.