News

In Memorial or Honorarium – October 2019

The ULF received donations in memorial or honorarium for the following during the month of October 2019. We apologize for any inadvertent omittance 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: Brownie’s Pro and Sports Hobbies Shop  Tori Brown: William Neville and Barbara ...read more

In Memorial or Honorarium – September 2019

The ULF received donations in memorial or honorarium for the following during the month of September 2019. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Alyssa Beck: Linda Beck  Shawn Blake: Nick and Jill Siragusa  Clark Cutler: Scott ...read more

Obituaries in 2019

It is with our deepest condolences that we recognize members of our ULF family that have passed in 2019. Huffer, Carolyn L. (passed November 9, 2019) Rettenmeier, Amy (September 26, 1991 - September 19, 2019)

In Memorial or Honorarium – August 2019

The ULF received donations in memorial or honorarium for the following during the month of August 2019. We apologize for any inadvertent omittance 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: Brownie’s Pro and Sports Hobbies Shop, James and Lois ...read more

In Memorial or Honorarium – July 2019

The ULF received donations in memorial or honorarium for the following during the month of July 2019. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Neil Kushnick: Jerome and Nancy Kushnick Alex Leef: Forrest Leef Jackson ...read more

In Memorial or Honorarium – June 2019

The ULF received donations in memorial or honorarium for the following during the month of June 2019. We apologize for any inadvertent omittance 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 Levine and Alice Howard Gregory Brown: Brownie’s ...read more

Not Giving Up #Leukodystrophy Community Shirt

Would you like your first name to be listed with other leukodystrophy families on the back of a t-shirt? We would like to include as many names as possible to show the strength of our community! A variety of shirt colors and styles will be available for purchase through Bonfire.com in ...read more

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 omittance or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Bobby Bellendir: Thomas and Mary Lou Rioux Chris Bellendir: Thomas ...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 ...read more

Kristy Kintner, MLD

by Colleen Kintner Kristy was 6 years of age when she was diagnosed with Metachromatic Leukodystrophy. We felt very lost and alone. We were blessed to have a quick diagnosis because Kristy's pediatrician had studied with one of the experts here in California at UCLA. Bill looked up articles about leukodystrophy and the name ...read more