Year: 2018

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 as possible, regarding both clinical …

Online Registry for Vanishing White Matter Now Available! Read More »

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 ourselves to learn as much …

Ashley Wolf, CTX Read More »

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 office@ulf.org or by calling 815.748.3211. IN HONOR OF Liam Becker: Amy Becker Nathan and Kathryn Borge: John and Karen Sheahan Alex Bouley: Bernard and …

In Memorial or Honorarium – November 2018 Read More »

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 office@ulf.orgor by calling 815.748.3211. IN HONOR OF Gregory Brown: John and Carol Brown Tory Brown: Julie Brown Zane Dial: Michael and Sandra Dial The …

In Memorial or Honorarium – October 2018 Read More »

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 office@ulf.org or by calling 815.748.3211. IN HONOR OF Alex Bouley: Bernard and Alice Howard Levine Elizabeth DeSpelder Rawlins: Daniel Lombardo and Karen Banta Billy …

In Memorial or Honorarium – September 2018 Read More »

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 hope for a cure. We …

2018 Benefit Drawing Read More »

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 office@ulf.org or by calling 815.748.3211. IN HONOR OF Gregory Brown: Michael Adamo, Theresa Hollnsteiner, Katelyn Tierney Thomas Cunningham: Sallie Griffiths Arwyn Hamilton: Debbie Stevens Noah Hinds: John and …

In Memorial or Honorarium – August 2018 Read More »

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 Neurogenetics,7th floor laboratory, rooms 706-711,UCL Institute of …

Leukodystrophy and genome sequencing: for genetically undiagnosed patients for the 100,000 genomes project Read More »

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 office@ulf.org or by calling 815-748-3211. IN HONOR OF David Anderson: L3 Aerospace Systems Amari Ball: Ken and Diane Mobeck Louis Goldman and Family: Alfred and …

In Memorial or Honorarium – July 2018 Read More »

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 office@ulf.org or by calling 815-748-3211. IN HONOR OF Sam Buck: Mr. and Mrs. Randall Horton Marc D’Amico: Mr. and Mrs. Randall Horton Kevin and …

In Memorial or Honorarium – June 2018 Read More »

Scroll to Top