News

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 ...read more

“Paul Korth 5K Memorial Run” on June 18th

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 ...read more

“Miss Dallas 5K Fundraiser for ULF”

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 of ...read more

CADASIL Summer Research Scholarship

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 are ...read more

Leukodystrophy Care Network Clinical Issues Survey

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 ...read more

Spanish Interpreter

The United Leukodystrophy Foundation is delighted to welcome Marcie Flores as its Spanish interpreter!  Marcie’s son is affected by 4 H 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 ...read more

Research Grants Awarded

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 work on ...read more

X-ALD Newborn Screening News!

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, as ...read more

Save the Dates!

Save the dates for the 2016 ULF Annual Conference and plan to join us! Scientific Symposium — July 28 Family Conference — July 28-30 Embassy Suites Downtown/Old Market in Omaha, Nebraska — Room rate of $129 A fabulous wrap-up celebration will be held at Omaha’s Henry Doorly Zoo & Aquarium. Enjoy the antics of penguins and the thrill of cocktails ...read more

William Kintner, D.Min., Th.M., LMFT

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 ...read more