Hi, my name is Justin, and I’m 12 years old.
Almost two years ago, my parents noticed that I was having trouble walking straight and sometimes I would just fall down. So, they took me to a bunch of doctors who ran tons of tests. DNA tests confirmed that I have a very rare genetic mutation called Giant Axonal Neuropathy (GAN).
Unfortunately, GAN comes with a fatal diagnosis (which is why it’s mostly kids and a few young adults who have it). That’s a big pill to swallow. But I’m a fighter and that’s why I started this page. Up until five years ago, there wasn’t even any research being done on this. I am one of about 50 kids in the world who have this disease.
I am lucky because my case of GAN is mild so far. Most of the other kids are not as lucky, and more often than not, GAN wins. I am unlucky because recently my little sister too has been diagnosed with GAN. But with your help, we can beat GAN. We need to beat GAN.
Our biggest challenge with research is that there is no federal funding for this disease because it isn’t an epidemic. There are no celebrities or telethons raising public awareness. In fact, there is only one charity, Hannah’s Hope Fund, which is raising money to fight this disease. It was started when the parents of a four year old girl named Hannah found out she had GAN. Over the past five years, they have raised significant money for research, but they need more. I need your help.
To help me raise awareness and money for GAN research, my twin brother Jared, is competing in a Half Ironman distance triathlon this fall. What’s remarkable is that only one other 12 year old has ever competed in such a race! He will swim, bike and run over 70 miles!!! Our goal is to help raise money so those of us with this disease can continue to SWIM, BIKE and RUN. We want to be just like every other kid…
His competition is Sunday November 3, 2013
All donations go directly to Hannah’s Hope Fund, the nonprofit organization established to fight GAN, and are tax-deductible. So please consider a pledge for each and every mile that he is racing for us.