Save the dates for the 2016 ULF Annual Conference and plan to join us! Scientific Symposium — July 28 Family Conference — July 28-30 Embassy Suites Downtown/Old Market in Omaha, Nebraska — Room rate of $129 A fabulous wrap-up celebration will be held at Omaha’s Henry Doorly Zoo & Aquarium. Enjoy the antics of penguins and the thrill of cocktails under the shark tunnel on Saturday night!
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 in that position until 2014. His work and dedication to the ULF was greatly appreciated, and his knowledge will be greatly missed. Our thoughts and prayers go out to his wife Colleen and son Kris, as they mourn his passing. The memorial service for Dr. Kintner will be held at the Redlands First United Methodist Church on Saturday, February 20th at 11:00 a.m. A reception will follow. The address is 1 East Olive, Redlands, CA 92373. You may send condolences through the ULF, if you do not have the Kintners’ contact information.
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
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 computer Bob Neubauer in IL — iPad Air 2 Deb Bernshausen in IL — Registration & lodging for 2 at the 2016 ULF Conference in Omaha for selling the most tickets Congratulations to our winners!
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. .