News

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…

ULF is proud to be a new member of the DeKalb, IL Chamber of Commerce. This was our recent ribbon cutting event.

October 4 — Ninety-one years ago today, an extraordinary man was born. We celebrate Dr. Hugo Moser for his pioneering research. At the time of his death in 2007, Dr. Moser was the Director of the Neurogenetics Research Center at the Kennedy Krieger Institute and was a Professor of Neurology…

Enjoy Halloween festivities in these fun costumes designed for those in wheelchairs: http://www.huffingtonpost.com/2012/10/01/best-halloween-costume-wheelchair-special-needs-buster-ice-cream-truck_n_1928714.html Have a great time!

Going to be in Dayton, Ohio on October 3rd?  Join in the fun at “A Walk in the Park for Daniel.”  All proceeds benefit the United Leukodystrophy Foundation. Here are the details. Thank you!

The Advisory Committee on Heritable Disorders in Newborns and Children Recommends Adrenoleukodystrophy (X-ALD) for RUSP The Adrenoleukodystrophy (ALD) patient and physician community has advocated for years to have ALD added to the Recommended Uniform Screening Panel (RUSP).  RUSP is the list of diseases that the federal government through the Secretary of…

Legislation requiring the Illinois Department of Public Health to provide all newborns with screening tests for the presence of adrenoleukodystrophy (ALD) under a new law sponsored by Illinois State Senator Dale Righter (R-Mattoon) was signed August 19th by Governor Bruce Rauner. “Screening for ALD at such an early stage will help…

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 1. The Medical and Scientific Advisory Board will review applications for scientific merit, feasibility, and…

Congratulations to Dr. Reuben Matalon with the University of Texas Medical Branch for having been honored with the 2016 ULF Service Award, which was presented to him at the ULF Conference on July 28th. The inscription reads: “The United Leukodystrophy Foundation honors Dr. Reuben Matalon for more than 30 years…

The UnitedHealthcare Children’s Foundation is seeking grant applications from families in need of financial assistance for their child’s health care treatments, services or equipment not covered, or not fully covered, by their commercial health insurance plan. Qualifying families can receive up to $5,000 per grant with a lifetime maximum of…

Congratulations to Dr. Ian Duncan of the University of Wisconsin – Madison School of Veterinary Medicine. He is the ULF research grant award recipient of $35,000!

Augusto Odone, who was born March 6, 1933, passed away on October 25, 2013 at the age of 80. A funeral service was held in Acqui Terma, Italy near Genoa on Saturday, October 26. Augusto, an economist for the World  Bank, was most known for his involvement with the creation…