News

News

The Leukodystrophy Care Network (LCN) – Establishing Care Guidelines

Imagine your child experiencing an unexplained sudden loss of basic functions – a toddler who once constantly walked and ran suddenly stumbling with each step; an infant with a healthy appetite who once smiled and cooed now crying inconsolably for every waking hour and only eating a few ounces of

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Forbes Health Writer, Rita Rubin, on ‪Lorenzo’s Oil‬, the Odones, & ‪‎ALD‬ ‪Newborn Screening

Lorenzo’s Oil Could Not Cure Lorenzo, But Newborn Screening Is Expected To Save Others From His Fate By: Rita Rubin Forbes.com Lorenzo’s Oil, a 1992 film starring Nick Nolte and Susan Sarandon, depicted Augusto and Michaela Odone’s quest for a treatment that could save their son Lorenzo from dying of

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Legislation Introduced to Enact Nationwide Newborn Screening for ALD

The Aidan Jack Seeger Foundation is excited to announce a new initiative to expand newborn screening for ALD nationally. With the introduction of S.2641 by the Senator Charles Schumer of New York and companion Bill H.R. 4692 by Congresswoman Yvette Clarke of New York, the Foundation is working to have every state test for ALD in

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Meet Justin D’Agostino: Our first AMN Patient Liaison

Justin D’Agostino was diagnosed with AMN in 2007. His younger brother was diagnosed a year earlier and passed away in 2010. Recently, Justin has endeavored to become active in the ALD community. He is passionate about disease management and quality of life concerns. Justin currently resides in Phoenix, Arizona. He enjoys

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bluebird bio to Present Clinical Data on Lenti-D in ALD at AAN 2016 Annual Meeting

CAMBRIDGE, Mass. – bluebird bio, Inc. (Nasdaq: BLUE), a clinical-stage company committed to developing potentially transformative gene therapies for severe genetic diseases and T cell-based immunotherapies for cancer, today announced that interim data from the ongoing Phase 2/3 Starbeam Study (ALD-102) for the treatment of cerebral adrenoleukodystrophy (CALD) will be

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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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The Myelin Project & Brian’s Hope Grant $50,000 to Dr. Raymond’s Lab

In partnership with Brian’s Hope Foundation, The Myelin Project granted $50,000 to Dr. Gerald Raymond‘s lab at the University of Minnesota. Raymond’ lab works in collaboration with the Inherited Metabolic and Storage Disease Bone Marrow Transplantation Program, the Center for Orphan Drug Research, the Center for Magnetic Resonance Research, and others,

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Dr. Ian Duncan

Dr. Ian Duncan Awarded Lifetime Achievement Award

We are proud to announce that Dr. Ian Duncan, Chair of our Scientific Advisory Committee, has been awarded the 2015 Lifetime Excellence in Research Award from the American Veterinary Medical Association for several years of work in myelin disease research. “Dr. Duncan has spent his career exploring the causes and

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