News

Dear Friends and Supporters of the United Leukodystrophy Foundation,  As the President of the ULF I am excited to talk to you about the many changes that are taking place as we build the future of the Foundation. In the past year, we’ve added seven new members to our board of directors. These new additions […]

Tickets are $50 each, and only 500 tickets will be sold. You are welcome to purchase as many tickets as you would like. Payment must be received by 12 PM Noon CST on Friday, March 27th, 2020. The drawing will be streamed on Facebook Live at 2 PM CST on the 27th. Follow us on

Worldwide, MLD occurs in 1 in 40,000 people, primarily children.  Early symptoms of MLD include trouble walking, impaired speech, and muscle weakness. The Embolden Study is conducting research for infants and children born with metachromatic leukodystrophy. Study overview: The Embolden Study is evaluating the safety and effects of a study drug on gross motor function (the abilities

Buy tickets for a chance to win a Disney vacation for 4! Support the United Leukodystrophy Foundation with the purchase of a Magical Memories Disney Raffle ticket. The winner of the raffle will receive $1,050 in Disney gift cards redeemable toward admission, food or souvenirs; 4-night stay in one standard guest room at the Hyatt

The VWM Registery is officially open! The Center for Childhood White Matter Disorders at the VU University Medical Center (VUmc) in Amsterdam, The Netherlands, has developed an online Registry for patients with Vanishing White Matter (VWM). The aim of the Registry is to collect as much insight in the disease course as possible, regarding both clinical

The time has come once again for the United Leukodystrophy Foundation’s Annual Benefit Drawing fundraiser! Thanks to the involvement of our members, friends, and donors like you, we are able to continue to award vital funding to researchers, who strive to find new treatments for the leukodystrophies and to provide hope for a cure. We

Henry Houlden, Professor of Neurology and Neurogenetics at the UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, Queen Square, London is looking to collect blood samples via mail or at their London hospital. Learn more here: http://bit.ly/2w5RtSe If you are interested in participating, please contact: Henry HouldenProfessor of Neurology and Neurogenetics,7th floor laboratory, rooms 706-711,UCL Institute of

Buy tickets for a chance to win a Disney vacation for 4! DEKALB, IL – February 1, 2018 – Support the United Leukodystrophy Foundation with the purchase of a Magical Memories Disney Raffle ticket. The winner of the raffle will receive $1,050 in Disney gift cards redeemable toward admission, food or souvenirs; 4-night stay in

Every year, the ULF puts a call out to the leukodystrophy medical professional community asking for research proposals in need of funding. The number of grant applications have consistently grown in the past years, and this year was no exception. Submissions from all over the country as well as internationally were considered by our Medical

This year’s Annual ULF Benefit Drawing winners have been chosen! We had a special Halloween visitor to the office this year to pull the winning tickets: 2-year-old Clark dressed up as Carl from the movie UP! The winners are… • $500 Visa Gift Card – Patrick M. of Virginia• Rolling iPad Stand – Roger L. of New York• Plush