Monthly Archives: February 2014

ALD Newborn Screening

Posted on February 28, 2014 by aidanhasaposse

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)

Posted on February 18, 2014 by aidanhasaposse

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

Posted on February 12, 2014 by aidanhasaposse

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 →

Posted on February 1, 2014 by aidanhasaposse | Leave a comment