News

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…

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,…

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…

This is the second Father’s Day that the family will be spending without their dad. Since they can’t celebrate with him, they’re going to celebrate for him!  They would love for you to join them as they celebrate their dad and yours at the 2nd Annual Paul Korth Memorial Father’s…

Fundraiser this Saturday! As the 2016 Miss Dallas, Brittany Tew is hosting “Miss Dallas 5K Benefiting the ULF” on Saturday, June 4th at Bachman Lake Park in Dallas: http://www.missdallas5k.com/ Brittany is a talented, ambitious young woman. She graduating from Baylor University with a 4.0 GPA, majoring in biology. At the age…

CADASIL is a rare, genetic disease that is both vascular and neurologic in nature. The cureCADASIL Association is offering a CADASIL Summer Research Scholarship to a student working in CADASIL research each year. The scholarship is open to undergraduate and graduate students and provides $5,000 to the chosen student. All details…

Imagine your child experiencing an unexplained sudden loss of basic functions – a toddler who once constantly walked and ran, suddenly stumbling with each step; an infant with a healthy appetite, who once smiled and cooed, now crying inconsolably for every waking hour and only eating a few ounces of…

The United Leukodystrophy Foundation is delighted to welcome Marcie Flores as its Spanish interpreter!  Marcie’s son is affected by 4H syndrome, and the family lives in the Chicago area. Marcie now serves with the ULF as a resource for Spanish-speaking families with questions about leukodystrophy. She can be reached at…

The United Leukodystrophy Foundation is proud to announce its grants, which were recently awarded to two prominent researchers for their promising projects: Dr. Adeline Vanderver with Children’s National Health System for her study of “Unclassified Leukodystrophie and Leukoencephalopathies: Compassionate Access to State-of-the-art Diagnostic Care.” Dr. Weston Miller at the University of Minnesota for his…

It’s official!  On February 16th, Sylvia Burwell, Secretary of Health and Human Services, accepted the Advisory Committee of Heritable Disorders in Newborns and Children’s recommendation to expand the Recommended Uniform Screening Panel (RUSP) to include the addition of X-ALD. This does not require states to test newborns for the disease,…

We thank Dr. Albee Messing with the Waisman Center at the University of Wisconsin-Madison for sharing two webinars and a podcast with updates on research on Alexander Disease. We hope that you will find this information useful: http://www.waisman.wisc.edu/alexander-disease/webinars.html

It is with great sadness that we share the news of the passing of Dr. William Kintner on Sunday January 3, 2016. Dr. Kintner was involved with the ULF since the early 1980’s. He served as the Board Vice President from 1986 to 2012. Bill was elected President of the…

Congratulations to Our Benefit Drawing Winners! A big thank you goes out to all of you who entered the ULF’s Annual Benefit Drawing! We received thousands of entries. The winners of our 2015 Benefit and their prizes are:  Maria Guerrero in MA – Handmade quilt by Anita Lewis  John Kelley…

At its conference in Boston in October, ALD Connect announced the new “Ann B. Moser ALD Community Award”, an honor which recognizes unusually impactful contributions to the ALD community at-large or major milestones in the history of the disease. This award was established in recognition of Mrs. Moser’s dedication to leukodystrophy…