X-ALD Newborn Screening News!

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 more

Save the Dates!

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 more

William Kintner, D.Min., Th.M., LMFT

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 more

Alexander Disease

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:

2015 Benefit Drawing Winners!

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 more

Well-deserved Award for Ann Moser

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 more

Chamber Ribbon Cutting

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

91 Years Ago

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 more

ULF Introduces New Executive Director – Bobbi Burgstone

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 more

Fabulous Halloween Costumes for Those in Wheelchairs

Enjoy Halloween festivities in these fun costumes designed for those in wheelchairs:   Have a great time!