BENEFITING: KENNEDY KRIEGER INSTITUTE INC
EVENT DATE: Apr 26, 2014
Hi. Thank you for viewing my fundraising page. I'm running my first 1/2 marathon to help raise awareness of Adrenoleukodystropy (ALD) and to help fund research for this life threatening disorder that affects two of my nephews.
ALD is a rare disorder that affects about 1 in 17,000 boys. Presently there is no cure, but research continues in the use of "Lorenzo's Oil" as a preventative therapy, bone marrow transplants, and gene therapy. There is also an effort to try and get ALD included in the newborn screening panel.
In basic terms, boys with ALD lack the ability to break down very long chain fats. In order to deal with the accumulation of fats, their bodies begin to store them in the adrenal cortex and myelin, which is the protective coating over the brain. This can lead to a progression of neurological issues and death usually within five years from the onset of symptoms.
The Kennedy Krieger Institute (KKI) is one of the organizations that supports ALD research and has been providing support and care for my nephews and many others impacted by ALD.
So, over the next 10 weeks or so, I'll be training for the 1/2 marathon. On race day I'll be running to bring attention to this disorder that has taken the lives of so many young boys. If you are able to donate to the fundraiser it would be greatly appreciated. If you do not have the means to do so, let me ask that you please help me spread the word about ALD to someone you know so that we can bring attention to this rare disorder.
Thank you again for visiting the fundraising page and for your donation.