News

In Memorial or Honorarium – April 2020

The ULF received donations in memorial or honorarium for the following during the month of April 2020. 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 Ryan D. Miller: Ellen Dodaro  Daxton Wallace: Sandy Wallace…

Minoryx Nexus Clinical Study for cALD

Minoryx Therapeutics is recruiting for a clinical trial focusing on cALD in Europe. The NEXUS clinical trial is a phase 2, open-label clinical study designed to assess the efficacy and safety of leriglitazone in male pediatric patients with early stage cerebral X-linked adrenoleukodystrophy (cALD). The NEXUS study recruits cALD patients…

#GivingTuesdayNow is May 5, 2020

Join the Global Day of Giving and Unity! #GivingTuesdayNow is set to take place on May 5, 2020 as an emergency response to the unprecedented need caused by COVID-19. The day is designed to drive an influx of generosity, citizen engagement, business and philanthropy activation, and support for communities and…

Sam Buck, VWM

“Until February 2013, our 2-year-old son Sam was completely normal child, no problems with his pregnancy or birth, he met every milestone, and overall was healthy. He would trip and fall a lot, but we never thought anything of it. Then on February 23, 2013, Sam was playing on our…

Addy Moss, 4H Syndrome

by Jen Moss, originally posted here: Mountain Parent Our story pivots around one precise moment. A phone call one afternoon in May 2016 almost four years ago. Every life event before and every moment since is redefined now in relation to the information we received that afternoon. The rest of…

In Memorial or Honorarium – March 2020

The ULF received donations in memorial or honorarium for the following during the month of March 2020. 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 Jarod Barndollar: Roger & Donna Barndollar  Megan Early: Chris…

A Message about Safety and COVID-19

March 2020  Dear ULF Community,  On behalf of the Board of Directors, Medical and Scientific Advisory Board, and the staff of the ULF, please know that we are following the developments of COVID-19 and feel the concerns of our community. At this time, all we can offer is advice on…

A Letter from the ULF President

Dear Friends and Supporters of the United Leukodystrophy Foundation,  As the President of the ULF I am excited to talk to you about the many changes that are taking place as we build the future of the Foundation. In the past year, we’ve added seven new members to our board…

In Memorial or Honorarium – February 2020

The ULF received donations in memorial or honorarium for the following during the month of February 2020. 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 Shayla Arrotta: Taytum Arrotta  The Brazeal Family: Patrick & Pamela Mumey …

Henry Crawley, PMLD

by David Crawley My son Henry is our first born, next to his beautiful and helpful 4 year old sister Rosemary. Henry is 5 years old (about to be 6) and he’s a happy, thoughtful, wonderful, kind, and loving little boy. He is very curious, imaginative, and funny. Every day…

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…

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…