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 this ride. We CAN save lives. A simple test that is readily available to us can help to monitor and treat boys born with ALD so they have the chance to go on and live a normal healthy life. Thank you all for your support!!
Clinical Trial for GENE THERAPY in Boston has begun
Some great news from Bluebird Bio who is responsible for starting the clinical trial on gene therapy for ALD. They are currently recruiting boys affected by ALD to undergo treatment. Very exciting as this was first successful in France with Dr. Auborg and we have finally brought this to the United States. Gene Therapy is thought to be a safer method as there is no anti-rejection medications used since they are using the patients own cells.
Please see the link for more information.
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 SCREENING
THANK YOU TO ALL THE AMAZING ARTISTS THAT HAVE CONTRIBUTED THEIR TIME AND GIFT TO THIS CAUSE AND SPECIAL THANKS TO BILTWELL INC FOR DONATING ALL OF THE HELMETS FOR OUR CAUSE.
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 and Senator Larkin were in attendance marking the anniversary and speaking about the developments and the 45 diseases that are screened for. Starting January 1, 2014 all newborns will be screened for ALD making NY the first state to test for 46 diseases.
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 2 year battle with the disease. His wife Diane and daughter Taylor have worked tirelessly to continue their “Run for ALD” and to fight both federally and in the state of New Jersey where they reside.
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 you so many lives will be saved. The signs you’ve sent me along the way and of course today is Good Friday and also exactly 11 months since you’ve left us.
I promised you when I started this fight that it would be done before your 1 year annivesary, the only gift I could possibly give to honor your life. I knew you were a miracle from the second I looked at your beautiful little face and you are an angel for so many boys that will be born after you with this dreaded disease.
There are no words to describe the pain I feel everyday without you, I just know you are here with me in spirit and that I will be with you again.
For the time I have here, I will continue to help all the boys and families with ALD and try to make a difference in their lives.
Love to all of you that have honored Aidan and all the boys and families struggling with this disease. Every petition, every phone call, every message, everytime you shared the story got us to today. It would have never happened without all of this support.