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…
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…
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…
Tickets for the 3rd Annual Magical Memories Disney Raffle are now available!
Tickets are $50 each, and only 500 tickets will be sold. You are welcome to purchase as many tickets as you would like. Payment must be received by 12 PM Noon CST on Friday, March 27th, 2020. The drawing will be streamed on Facebook Live at 2 PM CST on…
In Memorial or Honorarium – January 2020
The ULF received donations in memorial or honorarium for the following during the month of January 2020. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815-748-3211. IN HONOR OF Sheryl Berger: Mr. & Mrs. John and Neva…
In Memorial or Honorarium – December 2019
The ULF received donations in memorial or honorarium for the following during the month of December 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 William Armstrong: Steven and Fortuna Scheige The Backenson Family: Thomas and…
In Memorial or Honorarium – November 2019
The ULF received donations in memorial or honorarium for the following during the month of November 2019. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Will Armstrong: Stuart and Brenda Bates Asher Fleming Bloxom: Elizabeth Daniels,…
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 omission 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…
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…
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…
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 Beck,…
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…
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 omission 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…
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 omission 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…
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 omission 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…
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…
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…
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…
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…
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 omission 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…
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…
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 course…
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…
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 omission 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…
In Memorial or Honorarium – October 2018
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 office@ulf.orgor by calling 815.748.3211. IN HONOR OF Gregory Brown: John and Carol Brown Tory Brown: Julie Brown Zane…