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 Day 5K. Come run, walk, eat, and enjoy the morning in honor of all the dads/ father figures in our lives! Paul Korth passed away on January 25, 2015 from a neurological condition called Adrenomyeloneuropathy (AMN). His family was his absolute favorite thing in the world. Watching his daughters play sports at Skutt Catholic High School brought him so much joy, and that is where the event will take place again this year. In the spirt of their dad, there is no registration cost to the event. Just come and enjoy! If you would like to make a donation, two funds have
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 21, she has already authored 3 books. Brittany tragically lost two young sisters to leukodystrophy and is dedicating her future to the practice of pediatric neurology after her program at Baylor College of Medicine. If you’re in the Dallas area, please participate in this event. Donations from non-participants are appreciated, as well.
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.