News

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/

ULF 2016 Research Grant Awardees

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 gifted researchers, each of whom …

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2016 Benefit Drawing Winners

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 Indiana Deb Bernshausen of Illinois …

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Research Grant Applications Now Being Solicited

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 through November 14, 2016. The ULF Medical and Scientific Advisory Board will review applications for scientific merit, feasibility, and likelihood to advance …

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2016 ULF Annual Conference

This year’s ULF Scientific Symposium and Family Conference was held in Omaha July 28-30. It provided an important opportunity for medical professionals to share their research advances and for families affected by leukodystrophy to interact with doctors. Attendees enjoyed a fantastic wrap-up dinner celebration at the Omaha Aquarium. Visit the United Leukodystrophy Foundation Facebook page …

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