Archive for February, 2016

Rare Disease Day 2016

On February 29th, 2016, we attended Rare Disease Day at the State Capitol building in Sacramento, CA with other rare disease advocates to raise awareness of rare diseases and advocate for legislation by targeting the general public, policy makers, public authorities, industry representatives, researchers, and health professionals. In partnership with the National Organization for Rare

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Janis Sherwood Joins our Board of Directors

It is with great pleasure that we welcome Janis Sherwood to our Board of Directors. Janis lost her son Sawyer to ALD back in 2003 and since then has been traveling thousands of miles throughout the country in a retrofitted 1981-model RV raising‪ awareness‬ of ‪‎ALD‬ to help other parents avoid the same

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ALD added to Recommended Uniform Screening Panel

Washington, D.C. – February 16th, 2016 – Secretary of the Department of Health & Human Services, Sylvia Burwell, approved the addition of adrenoleukodystrophy (ALD) to the Recommended Uniform Screening Panel (RUSP), the federal list of genetic diseases recommended for state newborn screening programs. The addition of ALD to the RUSP may expedite

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