News

Online Registry for Vanishing White Matter Now Available!

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 …

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2018 Benefit Drawing

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 …

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Leukodystrophy and genome sequencing: for genetically undiagnosed patients for the 100,000 genomes project

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 …

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Magical Memories Disney Raffle to Benefit Leukodystrophy Medical Research

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 …

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2017 Research Grant Awardees

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 …

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2017 Benefit Drawing Winners

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 …

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Dr. David Edwin

We at the ULF wish to send our sympathy to the family of one of our main contributors to our annual ULF family conference who passed away in June. His obituary is below. Dr. Edwin has been a contributor addressing the psychological needs of our families and how they can cope with the health issues that relate …

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Dr. Wolfgang Koehler Wins 2017 Dr. Hugo Moser Service Award

Congratulations to Dr. Wolfgang Koehler of Fachkrankenhaus Hubertusburg gGmbH in Wormsdorf, Germany!  He is the recipient of the 2017 Dr. Hugo Moser Service Award for his decades-long commitment to the United Leukodystrophy Foundation and to affected families and for his advancements in leukodystrophy research. This award was presented to Dr. Koehler during the ULF Scientific …

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5K & Volleyball Fundraisers

The United Leukodystrophy Foundation sends out a great big THANK YOU to Debbie & Pat Sinnott and Chris & Megan Korth for hosting recent fundraisers to benefit the ULF! Both in Nebraska, the Sinnott Sand Bar ran its annual volleyball tournament, and the Korths presented the 3rd Annual Paul Korth Memorial 5K. Proceeds from these 2 …

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