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 »
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 …
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 Karen Sheahan Alex Bouley: Bernard and …
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 Dial: Michael and Sandra Dial The …
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 Lombardo and Karen Banta Billy …
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 …
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 Hamilton: Debbie Stevens Noah Hinds: John and …
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 …
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 Louis Goldman and Family: Alfred and …
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 Mrs. Randall Horton Kevin and …
