Category Archives: Uncategorized

AIDAN’S LAW is Official. New York State will be the first state to test all newborns for ALD starting no later than January 1, 2014 Aidan I know you were with me every step of the way and because of … Continue reading →

Hunter’s Hope helps us contact legislators for Aidan’s Law

Picture 1     Senator Golden, Bobby & Elisa Seeger, Senator Lanza and Assemblywoman Malliotakis  We are happy for our victory in passing this from the Senate Health Committee to the Finance Committee. As you can see Bobby’s joy!! Picture 2   … Continue reading →

Kelley Family & Lee & Steve working towards legislation in Connecticut

Aidan’s Bill S2386 will go before the Senate Health Committee this Thursday February 28, 2013 at 12:00 in Albany. Thank you to Senator Hannon, Chair of the Health Committee for making this a priority and to all the members of … Continue reading →

We made our way up to Albany this past Monday February 4th and had over 40 meetings scheduled with the ALL Health Committee members. Thank you to Aidan’s Grandpa Bob for helping me split the meetings in half and getting … Continue reading →

This holiday season we decided to help a family with ALD. These are our friends ( and Posse members!)    Lee and her beautiful son Steve.  Steve has Adrenoleukodystophy. He was diagnosed at 7 and was not eligible for a transplant … Continue reading →

To read the full article, Click the image above to be redirected to The Brooklyn Daily Eagle article.

We were fortunate to be picked up by a few local Newspapers this last week, The NY POST, The Brooklyn, Paper, and the Brooklyn courier. Here’s some pictures below. Sunday’s NY POST. The cover and interior of the Brooklyn Courier. … Continue reading →

Thank you all the friends and family that came out to City Hall in NYC yesterday for our press conference to help add ALD to the Newborn Screening Panel. Senator Golden’s Office, Assemblyman Brennan, Councilman Greenfield and Councilman Williams for … Continue reading →