Shire is conducting a natural history study to assess the natural course of Metachromatic leukodystrophy (MLD) in children under 12. In addition to gaining a better understanding of this disorder, the results from this study may help inform the development of a future treatment. This is a two-year study that requires approximately ten visits to the study location. Travel expenses to and from study-related appointments will be reimbursed by the study sponsor. For more information visit ClinicalTrials.gov: NCT01963650
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 advocacy. She continues her work as a research associate in neurology at the Kennedy Krieger Institute in Baltimore, paving the way to many scientific advances. Ann and Hugo Moser were very instrumental in the early and continued success of the United Leukodystrophy Foundation. Ann has been investigating lipid metabolism in inborn errors of metabolism for more than 40 years. Along with her late husband, Dr. Hugo W. Moser, they developed the original methods for quantitation of very long-chain fatty acids in plasma and cells by gas chromatography that are used to diagnose X-linked adrenoleukodystrophy
ULF is proud to be a new member of the DeKalb, IL Chamber of Commerce. This was our recent ribbon cutting event.
ALD Connect is having a annual meeting follow-up webinar on Monday, November 2 at 2:00 pm EST. Click here to register for the webinar: https://attendee.gotowebinar.com/register/1577403731550452738 The annual meeting recordings are available for viewing by clicking here: http://www.aldconnect.org/2015-annual-meeting.php
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 University. A world renown neurologist, he specialized in genetic disorders that affect the nervous system in children, particularly the disease adrenoleukodystrophy. Dr. Moser founded the United Leukodystrophy Foundation in 1982. More information about Dr. Moser’s illustrious career can be found at http://www.x-ald.nl/hugo-moser
The United Leukodystrophy Foundation is proud to welcome Bobbi Burgstone as its new Executive Director. For 19 years, Bobbi has served in senior management roles for non-profit organizations, including the American Association of Neurological Surgeons and the National Multiple Sclerosis Society. She is active in professional and community organizations. In addition to serving as a commissioner on the Oswego Historic Preservation Commission, Burgstone is the Chair of the Oswegoland Park and Recreation Foundation and a member of the Association of Fundraising Professionals. Burgstone earned a Bachelor of Science degree in education from Southern Illinois University and her Master of Science degree with highest honors in education and social policy from Northwestern University. She lives in Oswego, IL. .
Enjoy Halloween festivities in these fun costumes designed for those in wheelchairs: http://www.goodnewsnetwork.org/dads-awesome-nonprofit-builds-wheelchair-based-halloween-costumes-for-kids/#.Vfse1IeFh0x.twitter http://www.huffingtonpost.com/2012/10/01/best-halloween-costume-wheelchair-special-needs-buster-ice-cream-truck_n_1928714.html https://www.facebook.com/media/set/?set=a.485046330860.291393.9972045860&type=3 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!
For those of you in the Lincoln, Nebraska area, please join us for our next fundraiser on Monday, September 21st between 5:00 and 9:00 p.m. Click here for more information.
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 that all states test newborns. On August 25, 2015, the Advisory Committee on Heritable Disorders in Newborns and Children met in Rockville, MD to consider the implications of adding X-linked Adrenoleukodystrophy (X-ALD) to the U.S. RUSP for newborns. This meeting was the culmination of years of work to gather expert opinion and unpublished data to build the case for the clear benefit and feasibility of newborn screening of ALD in the U.S. Parents and family members gave heart-wrenching public testimony during the public comment period on how newborn screening and early detection can save lives and impact