The first time I heard Aidan's name was on my son's 13th day of life. It was the day after we received my son's diagnosis of adrenoleukodystrophy (ALD) through New York's newborn screening program. A nurse practitioner that specializes in genetics sat across from our new family of three in a prominent NYC hospital. She shared a LOT of information with us. What this disease was. How to spell it. What it meant. What it could mean. What my son's monitoring schedule would look like. Current research. I would be lying if I said I remembered it all. But what I do remember - crystal clear - is her telling me the reason ALD was on the newborn screening panel. Aidan's mom. "She's actually right across the bridge from you in Brooklyn," she said. Hearing her name and knowing her story is what gave me hope. I was given the gift of knowledge of this disease before it had the potential to rob me of my only child.
It took me two and a half years to work up the courage to cross that bridge. The actual journey was about ten miles, but for the soul of a mother searching for months to find the right words to say "thank you" - it felt endless. I arrived at Aidan's Ride exactly five years ago and got to meet Elisa and the Seeger family. We hugged and cried, but we laughed too. Elisa's passion for fighting for what is right is extraordinarily contagious - so as you might imagine, I've crossed that bridge quite a few times since then. And now, we're crossing many others together.
And it's not just us. It's an entire community that took ten years to build. Crossing bridges for what is right: a country where every baby has equal access to newborn screening and the medical monitoring that follows a diagnosis at birth. Family members are crossing bridges to testify on behalf of loved ones who died from this awful disease. Our clinicians are crossing bridges to do the same and speak at medical conferences to educate others about standards of care. Biological specimens such as blood and saliva from patients are crossing not just bridges - but the entire globe - so researchers can learn more about this disease and find better treatment options. Artists and riders are crossing bridges to bring Aidan's legacy and our mission to every corner of the continent.
Thirty-six states are now screening babies for ALD. Fifty states are visible on the horizon, but the broken system still exists. As more newborn screening tests are developed for children that will die or become permanently disabled without equal access, our efforts persist. We're not winding down. We're building up. We're so thankful for everyone that has been along for the ride on this journey. We've accomplished so much and have helped a lot of families and their children along the way. There is so much more to come. If you're within driving distance to Brooklyn, we hope you'll come out to support and have a good time. And if you've just been diagnosed and are scared to cross that bridge, I promise - it's less scary on the other side. There is so much love waiting for you there.
See you Sunday!!
Miranda
[email protected]
*Note this event is FREE for ALD families* No motorcycle required :)
It took me two and a half years to work up the courage to cross that bridge. The actual journey was about ten miles, but for the soul of a mother searching for months to find the right words to say "thank you" - it felt endless. I arrived at Aidan's Ride exactly five years ago and got to meet Elisa and the Seeger family. We hugged and cried, but we laughed too. Elisa's passion for fighting for what is right is extraordinarily contagious - so as you might imagine, I've crossed that bridge quite a few times since then. And now, we're crossing many others together.
And it's not just us. It's an entire community that took ten years to build. Crossing bridges for what is right: a country where every baby has equal access to newborn screening and the medical monitoring that follows a diagnosis at birth. Family members are crossing bridges to testify on behalf of loved ones who died from this awful disease. Our clinicians are crossing bridges to do the same and speak at medical conferences to educate others about standards of care. Biological specimens such as blood and saliva from patients are crossing not just bridges - but the entire globe - so researchers can learn more about this disease and find better treatment options. Artists and riders are crossing bridges to bring Aidan's legacy and our mission to every corner of the continent.
Thirty-six states are now screening babies for ALD. Fifty states are visible on the horizon, but the broken system still exists. As more newborn screening tests are developed for children that will die or become permanently disabled without equal access, our efforts persist. We're not winding down. We're building up. We're so thankful for everyone that has been along for the ride on this journey. We've accomplished so much and have helped a lot of families and their children along the way. There is so much more to come. If you're within driving distance to Brooklyn, we hope you'll come out to support and have a good time. And if you've just been diagnosed and are scared to cross that bridge, I promise - it's less scary on the other side. There is so much love waiting for you there.
See you Sunday!!
Miranda
[email protected]
*Note this event is FREE for ALD families* No motorcycle required :)
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