Today we celebrate the 10th anniversary of ALD newborn screening in New York. New York was the first state to implement the test following Aidan's Law which had passed earlier that year thanks to the Seeger Family’s persistence (which included eleven months of petitioning, countless emails and phone calls, and 40 meetings in one day in Albany). Our hero Aidan, a beautiful blue-eyed Brooklyn boy who enjoyed soccer and chess, lives on not only in the hearts of those who loved him but the lives his legacy has saved through this foundation's mission.
“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. For the time I have left here, I will continue to help all the boys and families with ALD and try to make a difference in their lives.”
-Elisa Seeger, Founder, ALD Alliance, on the passing of Aidan’s Law
March 29, 2013
Within the first month of the implementation of ALD newborn screening in New York, three boys were diagnosed with ALD and 1 girl was diagnosed with a different peroxisomal disorder that would not have been picked up without the screening. Fast forward to today and more than 2.2 million babies have been screened with 157 babies having been diagnosed. Those children are now receiving the life saving monitoring and/or treatment needed to grow up and live their best possible lives.
One of those boys, Conner Hess, was diagnosed with cerebral ALD last year after being diagnosed with ALD at birth through Aidan’s Law. His mother, Richelle, shared her thoughts with us on this newborn screening milestone following Conner's treatment:
"One year ago instead of counting down the days until Christmas and feeling the excitement of the holidays, we were scared and nervous with the news of Conner, our then five year old loving, caring and bubbly boy had developed Cerebral Ald. We knew that one day one of his MRIs might give the dreadful news but actually getting news no mental preparation could ease. The terrifying thought of, "what if he doesn't have a match, what do we do?" God heard our worries and gave us the most wonderful news of the FDA approving gene therapy. From the moment of being introduced to the horror of ALD from newborn screening we had heard of gene therapy being in the "works". Never had it ever crossed my mind that it would come at the most perfect timing for my son. So many "what ifs" ran through my mind last Christmas. Especially the what if this is the last Christmas we will ever celebrate with Conner or the last one with him being a healthy, beautiful cognitive boy. This Christmas after his gene therapy transplant, not only can we just count down the days until Christmas but enjoy everyday knowing that Conner has a future and a bright one at that. He was given the gift of life and there is no greater gift than that. We are forever grateful and in debt to everyone that has contributed to saving him, which all started with newborn screening."
-Richelle Brooks, Conner’s mom
December 18, 2023
-Elisa Seeger, Founder, ALD Alliance, on the passing of Aidan’s Law
March 29, 2013
Within the first month of the implementation of ALD newborn screening in New York, three boys were diagnosed with ALD and 1 girl was diagnosed with a different peroxisomal disorder that would not have been picked up without the screening. Fast forward to today and more than 2.2 million babies have been screened with 157 babies having been diagnosed. Those children are now receiving the life saving monitoring and/or treatment needed to grow up and live their best possible lives.
One of those boys, Conner Hess, was diagnosed with cerebral ALD last year after being diagnosed with ALD at birth through Aidan’s Law. His mother, Richelle, shared her thoughts with us on this newborn screening milestone following Conner's treatment:
"One year ago instead of counting down the days until Christmas and feeling the excitement of the holidays, we were scared and nervous with the news of Conner, our then five year old loving, caring and bubbly boy had developed Cerebral Ald. We knew that one day one of his MRIs might give the dreadful news but actually getting news no mental preparation could ease. The terrifying thought of, "what if he doesn't have a match, what do we do?" God heard our worries and gave us the most wonderful news of the FDA approving gene therapy. From the moment of being introduced to the horror of ALD from newborn screening we had heard of gene therapy being in the "works". Never had it ever crossed my mind that it would come at the most perfect timing for my son. So many "what ifs" ran through my mind last Christmas. Especially the what if this is the last Christmas we will ever celebrate with Conner or the last one with him being a healthy, beautiful cognitive boy. This Christmas after his gene therapy transplant, not only can we just count down the days until Christmas but enjoy everyday knowing that Conner has a future and a bright one at that. He was given the gift of life and there is no greater gift than that. We are forever grateful and in debt to everyone that has contributed to saving him, which all started with newborn screening."
-Richelle Brooks, Conner’s mom
December 18, 2023
Conner having fun at his school’s circus last month.
As a new year begins, we are looking ahead as much as we are reflecting back. This is our wish for all our rare children - a bright future made possible through newborn screening. Thirty-nine states are now screening babies for ALD, but NOT ONE STATE is screening for all diseases on the federally recommended screening panel (RUSP). We will continue to push forward at both the state and federal level until our country’s newborn screening system is an equitable one that can keep pace with current treatment and therapies. We have more exciting projects to announce in the new year. Thank you to everyone who has been along for the ride. Here’s to the accomplishments to come in 2024!
RSS Feed
