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Come join us for this amazing ride through West Virginia to raise money to support national newborn screening for ALD and to help families affected by the disease. I am amazed by the generosity of everyone involved in putting together … Continue reading
Only a few hours left! Thank you to each and every amazing artist who donated their time and to Biltwell Inc. for donating all of helmets.
LUCKY 13 HELMET AUCTION WILL START SEPTEMBER 21, 2013 AT THE INDIAN LARRY MOTORCYCLES 10TH ANNUAL BLOCK PARTY THE MONEY RAISED WILL GO TO HELP FAMILIES AFFECTED WITH ALD AND TO SUPPORT ADVOCATING FOR ALL STATES TO HAVE ALD NEWBORN … Continue reading
Coverage of the 50th Anniversary of Newborn Screening which was held in Albany, NY at the Wadsworth Center on August 6, 2013. Commissioner of Health Nariv Shah, the Director of the Newborn Screening Lab at the Wadsworth Center Michele Caggana … Continue reading
Congratulations to the Kane family that have worked so hard to raise money for ALD research and to have ALD added to the Newborn Screening Panel. Jack Kane was diagnosed with ALD in his mid 40′s and died after a … Continue reading
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