Walking for Universal Newborn Screening
Hi everyone. For those of you not familiar with my story, both of my boys have Metachromatic Leukodystrophy Disease (MLD). Its a genetic disorder passed down to them from both my wife and I. Neither one of us knew we were carriers of this genetic disorder. If MLD had been part of NY and NJ newborn screening program, our lives may be a bit different today. Both boys received stem cell transplants in January of 2010 in order to slow the progression of MLD as there is no cure for it. Each state screens for different disorders in newborns.
We are participating in a walk for Universal Newborn Screening next month organized by Hunter's Hope. Its the organization set up by Bills HOF QB Jim Kelly after his son Hunter passed away from Krabbe Leukodystrophy. Hunter's Hope was a big help to us during the boys treatment and stem cell transplants.
We are looking for donations to sponsor our walk. I know everyone's financial status is different. If you are feeling charitable and would like to make a tax-deductible donation, below is a link to my flyer that is posted on facebook as well as link to our donations page with Hunter's Hope. Your donations will help fund research on all genetic disorders, help to get legislation passed to get these disorders included in the newborn screening program and to help all Leukodystrophy familes.
Thanking all of my fellow Dolphins fans in advance.
Facebook Link:https://www.facebook.com/notes/carmelo- ... 7214214244
Donations Page Link:http://www.huntershope.org/goto/sereno-warriors-14