Category Archives: Uncategorized

ALD Newborn Screening

Newborn Screening for ALD in New York State started as of December 30, 2013 In just 30 days there have been 3 positive ALD boys and 1 girl with another disorder picked up by the test. Proof that newborn screening … Continue reading

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Add ALD to the Recommended Uniform Screening Panel (RUSP)

Add ALD to the Recommended Uniform Screening Panel (RUSP) Please sign this new petition to have ALD added to the Recommended Newborn Screening Panel, the majority of states will NOT move forward without his happening. Thank you for your support. … Continue reading

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Hunter’s Hope Auction

Hunter’s Hope Auction Tune in tomorrow at 9:15 on WGR 550 Sports Radio in Buffalo, NY or on www.wgr550.com I’ll be helping our friends at Hunter’s Hope raise money for leukodystrophies by telling our story about Aidan and ALD.Jim and Jill Kelly … Continue reading

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On January 16, HRSA’s Secretary Advisory Committee (SAC) unanimously voted in favor of moving ALD newborn screening forward to an external evidence review committee. Dr Jerry Raymond, Pediatric Neurologist at University of Minnesota Medical Center, Fairview, and Dr. Amber Salzman, … Continue reading

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California Newborn Screening Press Conference

THANK YOU!! Dr. Richard Pan for introducing the Bill in California and holding a press conference yesterday to support ALD Newborn Screening, we still have a way to go, but this is great progress!! Jeremy Hill Sr. for speaking about … Continue reading

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What is ALD?

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CYCLE SOURCE MAGAZINE

I have tears in my eyes as I opened a box of the new Cycle Source Magazine with Aidan’s Ride on the cover. I am so grateful to Chris Callen, Kristen Fowler, Amanda McAdams, Matthew Breeder Fowler, Amanda Lavery and everyone that has made Aidan’s Ride in … Continue reading

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AIDAN’S RIDE THROUGH THE COUNTRYSIDE

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

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Clinical Trial for GENE THERAPY has begun in Boston

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 … Continue reading

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LUCKY 13 HELMET AUCTION

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.

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