News

The United Leukodystrophy Foundation is delighted to welcome Marcie Flores as its Spanish interpreter!  Marcie’s son is affected by 4H syndrome, and the family lives in the Chicago area. Marcie now serves with the ULF as a resource for Spanish-speaking families with questions about leukodystrophy. She can be reached at 708-998-8977 or marcie.flores55@gmail.com.

The United Leukodystrophy Foundation is proud to announce its grants, which were recently awarded to two prominent researchers for their promising projects: Dr. Adeline Vanderver with Children’s National Health System for her study of “Unclassified Leukodystrophie and Leukoencephalopathies: Compassionate Access to State-of-the-art Diagnostic Care.” Dr. Weston Miller at the University of Minnesota for his work on “Characterization of the

It’s official!  On February 16th, Sylvia Burwell, Secretary of Health and Human Services, accepted the Advisory Committee of Heritable Disorders in Newborns and Children’s recommendation to expand the Recommended Uniform Screening Panel (RUSP) to include the addition of X-ALD. This does not require states to test newborns for the disease, as there is no funding

We thank Dr. Albee Messing with the Waisman Center at the University of Wisconsin-Madison for sharing two webinars and a podcast with updates on research on Alexander Disease. We hope that you will find this information useful: http://www.waisman.wisc.edu/alexander-disease/webinars.html

It is with great sadness that we share the news of the passing of Dr. William Kintner on Sunday January 3, 2016. Dr. Kintner was involved with the ULF since the early 1980’s. He served as the Board Vice President from 1986 to 2012. Bill was elected President of the ULF in 2012 and served

Congratulations to Our Benefit Drawing Winners! A big thank you goes out to all of you who entered the ULF’s Annual Benefit Drawing! We received thousands of entries. The winners of our 2015 Benefit and their prizes are:  Maria Guerrero in MA – Handmade quilt by Anita Lewis  John Kelley in PA — Lenova laptop

At its conference in Boston in October, ALD Connect announced the new “Ann B. Moser ALD Community Award”, an honor which recognizes unusually impactful contributions to the ALD community at-large or major milestones in the history of the disease. This award was established in recognition of Mrs. Moser’s dedication to leukodystrophy research, education, and newborn screening

ULF is proud to be a new member of the DeKalb, IL Chamber of Commerce. This was our recent ribbon cutting event.

October 4 — Ninety-one years ago today, an extraordinary man was born. We celebrate Dr. Hugo Moser for his pioneering research. At the time of his death in 2007, Dr. Moser was the Director of the Neurogenetics Research Center at the Kennedy Krieger Institute and was a Professor of Neurology and Pediatrics at Johns Hopkins

Enjoy Halloween festivities in these fun costumes designed for those in wheelchairs: http://www.huffingtonpost.com/2012/10/01/best-halloween-costume-wheelchair-special-needs-buster-ice-cream-truck_n_1928714.html Have a great time!