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 in this letter and the flyer. The application is due by April 15th. There is very little CADASIL research, particularly in the U.S., and this organization is targeting colleges/universities with strong research programs in neurology, genetics, and microbiology. Perhaps there are students in the ULF community who may be interested in this opportunity. Questions? Contact cureCADASIL at firstname.lastname@example.org or 307-215-9840.
Shannon W., a student at Miami University of Ohio, is hosting a fundraiser to benefit the United Leukodystrophy Foundation April 18-22 at Bob Evans Restaurant in West Chester, Ohio. The details are on this flyer. If you’re going to be in the area then, please stop by to support Shannon and the ULF. Thanks!
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 milk a day; a high school cheerleader suddenly losing all muscular control at a football game and shaking violently on the field. Each of these real-life examples is the result of a disease group called the Leukodystrophies. Leukodystrophies makes up an inherited group of over 40 disorders of the white matter in the brain, affecting 1 in 7,000 individuals. Onset of symptoms can occur in the first months of life through adulthood, and can cause a rapid loss of abilities, such as voluntary movement and speaking, and result in severe morbidity and death. In spite of the thousands affected by
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 at 708-963-8096 or email@example.com
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 “Characterization of the Frequency and Function of CD4+ Regulatory T-cells in Boys with Cerebral Adrenoleukodsytrophy.” The ULF wishes them well with their research, as they seek to improve the lives of those affected by the leukodystrophies.
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 there is no funding accompanying this acceptance; however, many states are poised to move forward with this support. New York already screens its newborns for X-ALD, and Illinois has passed legislation to do so. Connecticut, New Jersey, and California are close behind. The ULF thanks all leukodystrophy advocates who participated in the long, hard process that helped to make this happen!
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 under the shark tunnel on Saturday night!
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 ULF in 2012 and served in that position until 2014. His work and dedication to the ULF was greatly appreciated, and his knowledge will be greatly missed. Our thoughts and prayers go out to his wife Colleen and son Kris, as they mourn his passing. The memorial service for Dr. Kintner will be held at the Redlands First United Methodist Church on Saturday, February 20th at 11:00 a.m. A reception will follow. The address is 1 East Olive, Redlands, CA 92373. You may send condolences through the ULF, if you do not have the Kintners’ contact information.
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
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 in PA — Lenova laptop computer Bob Neubauer in IL — iPad Air 2 Deb Bernshausen in IL — Registration & lodging for 2 at the 2016 ULF Conference in Omaha for selling the most tickets Congratulations to our winners!