News

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

In Memorial or Honorarium – March 2019

The ULF received donations in memorial or honorarium for the following during the month of March 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: Terry and Kelly Smith Brazeal Family: Patrick and ...read more

In Memorial or Honorarium – February 2019

The ULF received donations in memorial or honorarium for the following during the month of February 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 Carter Bowman: Katie and Clay Bowman Peter Brownlee: Olinda Kober Alec ...read more

In Memorial or Honorarium – January 2019

The ULF received donations in memorial or honorarium for the following during the month of January 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: John and Carol Brown, Mary Wheeler Clark Cutler: ...read more

Magical Memories Disney Raffle 2019

Buy tickets for a chance to win a Disney vacation for 4! Support the United Leukodystrophy Foundation with the purchase of a Magical Memories Disney Raffle ticket. The winner of the raffle will receive $1,050 in Disney gift cards redeemable toward admission, food or souvenirs; 4-night stay in one standard guest ...read more

In Memorial or Honorarium – December 2018

The ULF received donations in memorial or honorarium for the following during the month of December 2018. 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 Peter and Mary Ann Backenson: Thomas and Brooke Backenson Alex ...read more

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 ...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 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 Liam Becker: Amy Becker Nathan and Kathryn Borge: John and Karen Sheahan Alex ...read more