News

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

Nicki Jorgensen, ALD

by Annika Jorgensen I am his mother (from Sweden) and he has an American father, Marcy. We have two daughters Amanda and Johanna, who are both older than Nicki. We were divorced before Nicki turned ill and his father lives in the States. When we were married, I lived in the ...read more

Andy Fingeroot, Canavan

by Alan Fingeroot Our son Andy died of Canavan disease when he was 15 years old. This is our story. No parent should have to endure the heartache of a child affected with a Jewish genetic disease. These diseases are preventable if you know your carrier status before you get pregnant.  Andy ...read more

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 office@ulf.org or by calling 815.748.3211. IN HONOR OF MaryAnn Backenson: Bryon and Kathleen Backenson Jarod Barndollar: Roger and ...read more

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 gross ...read more