Year: 2017

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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Michelle Fingeroot

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 missed.

New MSAB Members Announced

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 Medicine –  Adeline Vanderver, M.D. with Children’s …

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2017 ULF Grant Cycle Now Open

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 applications for scientific merit, feasibility, …

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Promising New Drug

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/

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