In Memorial or Honorarium – May 2019
The ULF received donations in memorial or honorarium for the following during the month of May 2019. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Bobby Bellendir: Thomas and Mary Lou Rioux Chris Bellendir: Thomas…
In Memorial or Honorarium – April 2019
The ULF received donations in memorial or honorarium for the following during the month of April 2019. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF MaryAnn Backenson: Bryon and Kathleen Backenson Jarod Barndollar: Roger and…
Embolden Study for MLD
Worldwide, MLD occurs in 1 in 40,000 people, primarily children. Early symptoms of MLD include trouble walking, impaired speech, and muscle weakness. The Embolden Study is conducting research for infants and children born with metachromatic leukodystrophy. Study overview: The Embolden Study is evaluating the safety and effects of a study drug on…
In Memorial or Honorarium – March 2019
The ULF received donations in memorial or honorarium for the following during the month of March 2019. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815-748-3211. IN HONOR OF Alex Bouley: Terry and Kelly Smith Brazeal Family: Patrick…
In Memorial or Honorarium – February 2019
The ULF received donations in memorial or honorarium for the following during the month of February 2019. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Carter Bowman: Katie and Clay Bowman Peter Brownlee: Olinda Kober…
In Memorial or Honorarium – January 2019
The ULF received donations in memorial or honorarium for the following during the month of January 2019. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Gregory Brown: John and Carol Brown, Mary Wheeler Clark…
Magical Memories Disney Raffle 2019
Buy tickets for a chance to win a Disney vacation for 4! Support the United Leukodystrophy Foundation with the purchase of a Magical Memories Disney Raffle ticket. The winner of the raffle will receive $1,050 in Disney gift cards redeemable toward admission, food or souvenirs; 4-night stay in one standard…
Online Registry for Vanishing White Matter Now Available!
The VWM Registery is officially open! The Center for Childhood White Matter Disorders at the VU University Medical Center (VUmc) in Amsterdam, The Netherlands, has developed an online Registry for patients with Vanishing White Matter (VWM). The aim of the Registry is to collect as much insight in the disease course…
Ashley Wolf, CTX
by John Wolf The ULF has been a part of my life for nearly 14 years. My involvement began shortly after my daughter, Ashley was diagnosed at the age of 10 with Cerebrotendinous Xanthomatosis (CTX) in 1994. After the initial shock of the diagnosis wore off, we took it upon…
In Memorial or Honorarium – November 2018
The ULF received donations in memorial or honorarium for the following during the month of November 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Liam Becker: Amy Becker Nathan and Kathryn Borge: John and…
In Memorial or Honorarium – October 2018
The ULF received donations in memorial or honorarium for the following during the month of October 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] by calling 815.748.3211. IN HONOR OF Gregory Brown: John and Carol Brown Tory Brown: Julie Brown Zane…
In Memorial or Honorarium – September 2018
The ULF received donations in memorial or honorarium for the following during the month of September 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Alex Bouley: Bernard and Alice Howard Levine Elizabeth DeSpelder Rawlins: Daniel…
2018 Benefit Drawing
The time has come once again for the United Leukodystrophy Foundation’s Annual Benefit Drawing fundraiser! Thanks to the involvement of our members, friends, and donors like you, we are able to continue to award vital funding to researchers, who strive to find new treatments for the leukodystrophies and to provide…
In Memorial or Honorarium – August 2018
The ULF received donations in memorial or honorarium for the following during the month of August 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Gregory Brown: Michael Adamo, Theresa Hollnsteiner, Katelyn Tierney Thomas Cunningham: Sallie Griffiths Arwyn…
Leukodystrophy and genome sequencing: for genetically undiagnosed patients for the 100,000 genomes project
Henry Houlden, Professor of Neurology and Neurogenetics at the UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, Queen Square, London is looking to collect blood samples via mail or at their London hospital. Learn more here: http://bit.ly/2w5RtSe If you are interested in participating, please contact: Henry HouldenProfessor of Neurology and…
In Memorial or Honorarium – July 2018
The ULF received donations in memorial or honorarium for the following during the month of July 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815-748-3211. IN HONOR OF David Anderson: L3 Aerospace Systems Amari Ball: Ken and Diane Mobeck…
In Memorial or Honorarium – June 2018
The ULF received donations in memorial or honorarium for the following during the month of June 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815-748-3211. IN HONOR OF Sam Buck: Mr. and Mrs. Randall Horton Marc D’Amico: Mr. and…
In Memorial or Honorarium – May 2018
The ULF received donations in memorial or honorarium for the following during the month of May 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815-748-3211. IN HONOR OF W. Boone: Thomas Blandford, Jr. Sophie Clarke: Julia Bolton Michael Collins: Catherine…
In Memorial or Honorarium – April 2018
The ULF received donations in memorial or honorarium for the following during the month of April 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Asher Fleming-Bloxom: Christine Fleming-Bloxom Nana Gumbs: Thomas Blandford, Jr. Joshua Ryan…
In Memorial or Honorarium – March 2018
The ULF received donations in memorial or honorarium for the following during the month of March 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Linda Fleming: Carlos Diaz George Frame: Ray and Christine Moddrell Clancy…
In Memorial or Honorarium – February 2018
The ULF received donations in memorial or honorarium for the following during the month of February 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Carter Bowman: Katie Bowman, Ken Monahan Zane Dial: Martha Conlon Dori Greene: Andrew…
In Memorial or Honorarium – January 2018
The ULF received donations in memorial or honorarium for the following during the month of January 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF MaryAnn Backenson: Bryon and Kathleen Backenson Asher Fleming-Bloxom: Keith Yale Ben…
Magical Memories Disney Raffle to Benefit Leukodystrophy Medical Research
Buy tickets for a chance to win a Disney vacation for 4! DEKALB, IL – February 1, 2018 – Support the United Leukodystrophy Foundation with the purchase of a Magical Memories Disney Raffle ticket. The winner of the raffle will receive $1,050 in Disney gift cards redeemable toward admission, food…
2017 Research Grant Awardees
Every year, the ULF puts a call out to the leukodystrophy medical professional community asking for research proposals in need of funding. The number of grant applications have consistently grown in the past years, and this year was no exception. Submissions from all over the country as well as internationally…
In Memorial or Honorarium – December 2017
The ULF received donations in memorial or honorarium for the following during the month of December 2017. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Blake Andrews: Kyle Roan Phillip Andrews: Kyle Roan Harrison Botta: Erik and…