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
The United Leukodystrophy Foundation is soliciting grant applications to support research in the leukodystrophies. Applications involving any of the leukodystrophies with budgets up to $30,000 (plus up to 10% indirect costs) will be accepted through November 1. The Medical and Scientific Advisory Board will review applications for scientific merit, feasibility, and likelihood to advance the field. Funding will be awarded by December 31, 2015 and extend for one year. Researchers must use the ULF Research Grant Application Template and submit applications electronically. Funded investigators will be invited to present their research at a future ULF Scientific meeting.
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 too often, those with ALD are diagnosed too late for treatment to work. It’s a terrible disease, but this law helps us get out in front of it and save our children.” ALD is a deadly genetic disease that affects one in 18,000 people. It more severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain’s neurons, the nerve cells that allow us to think and to control muscles. “ALD appears mainly in childhood, especially between the ages of four and ten.” Righter added. “That’s why it’s essential to
The UnitedHealthcare Children’s Foundation is seeking grant applications from families in need of financial assistance for their child’s health care treatments, services or equipment not covered, or not fully covered, by their commercial health insurance plan. Qualifying families can receive up to $5,000 per grant with a lifetime maximum of $10,000 per child. Children must be ages 16 or younger, and families must meet economic and have a commercial health insurance plan. Parents or legal guardians may apply for grants at www.UHCCF.org <http://www.uhccf.org/> , and there is no application deadline. http://www.uhccf.org/apply/learn-more-about-medical-grants/grant-application -criteria/
Congratulations to the winners of our 2014 Annual Benefit Drawing! Jeffery P. of McKees Rocks, PA won the Orange Lake/Disney time share, Mary K. of Bay Head, NJ won the hand made quilt by Anita Lewis and Lynn N. of Schaumburg, IL won the Wisconsin Dells time share. Thank you to everyone for your support!