News

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…

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…

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…

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…

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…

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…

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….

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…

It is with saddened hearts that we share the news that our dear friend and ULF Board Member Michelle Fingeroot passed away on June 16th after a long and brave battle against breast cancer. Our condolences go out to our Board Member Alan Fingeroot and his family. Michelle will be deeply…

The United Leukodystrophy Foundation is pleased to announce the addition of four new members to its Medical and Scientific Advisory Board. Their involvement will expand the reach of the ULF, benefit research, and assist patient families: –  Genevieve Bernard, M.D., FRCPC with McGill University –  Joshua Bonkowsky, M.D., Ph.D. with University of Utah School of…

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 from June 1 through October 2, 2017. The ULF Medical and Scientific Advisory Board will review…

An exciting new drug has been developed by Northwestern University scientists and approved by the FDA. Although the focus is cancer, this article states that “the new drug is able to cross the challenging blood-brain barrier” and “can be applied to other types of neurological diseases.” https://news.northwestern.edu/stories/2017/may/spherical-nucleic-acid-drug-human-brain-cancer-glioblastoma/

On our 35th anniversary, we are reflecting on our journey thus far and honoring all of our loved ones. By pledging $35 or more, you can help us to build a stronger foundation and extend our reach to new heights. With a flat donation or a monthly pledge, you are helping us to continue our…

The ULF Scientific Review Committee reviewed the many, high-quality research grant applications that were submitted from around the world for ULF funding. We received 3 times as many proposals this round than last, and we appreciate all of the proposal submissions from devoted scientists. The United Leukodystrophy Foundation congratulates these…

THANK YOU for participating in this year’s Benefit Drawing to raise money for leukodystrophy research. The drawing was held at the ULF office on Friday, September 30th. We congratulate these winners! Cheryl Serra of Missouri Betty Armbrust of Illinois Julie Malinowski of Michigan Kim Chaney of Illinois Phyllis Melick of…