BENEFITING: KENNEDY KRIEGER INSTITUTE INC
EVENT DATE: Jul 26, 2015
Hi. Thank you for viewing my fundraising page for Adrenoleukodystrophy (ALD). Originally, this was developed in support of my first marathon, which I ran to help raise awareness of ALD and to help fund research for this life threatening disorder that affects two of our three sons.
Since then this page has remained active due to the support of friends and family who also want to raise awareness and funds through their own efforts. Coming up in July, our good friend Kelly Yanek will be participating her first IRONMAN competition in Lake Placid, NY in support of ALD awareness. If you are able, please support Kelly’s efforts and donate by selecting her name below and hitting the donate button. Thank you Kelly for being part of the team!
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 family and many others impacted by ALD.
Thank you again for visiting the fundraising page and for your donation.