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!
Going to be in Dayton, Ohio on October 3rd? Join in the fun at “A Walk in the Park for Daniel.” All proceeds benefit the United Leukodystrophy Foundation. Here are the details. Thank you!
The Advisory Committee on Heritable Disorders in Newborns and Children Recommends Adrenoleukodystrophy (X-ALD) for RUSP The Adrenoleukodystrophy (ALD) patient and physician community has advocated for years to have ALD added to the Recommended Uniform Screening Panel (RUSP). RUSP is the list of diseases that the federal government through the Secretary of Health and Human Services recommends …
Legislation requiring the Illinois Department of Public Health to provide all newborns with screening tests for the presence of adrenoleukodystrophy (ALD) under a new law sponsored by Illinois State Senator Dale Righter (R-Mattoon) was signed August 19th by Governor Bruce Rauner. “Screening for ALD at such an early stage will help save lives,” Righter said. “All …
