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 ...
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 ...
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 ...
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 ...
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 ...
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 ...
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 ...
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 ...
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 ...
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 ...
