Vigil Neuro: ALSP Community Letter
The ULF is happy to share a community letter from Vigil regarding their potential treatment option for those affected by ALSP! Here is a preview but click the links below to read the whole letter and press release. “Dear ALSP Community Members: This week we announced positive interim data from…
ALSP Community Survey: Genetic Testing
Vigil Neuroscience, a biotechnology company researching potential treatments for ALSP, is engaging with the ALSP patient community, caregivers, advocacy groups, and healthcare providers to better understand the needs of community members. Open Health is an independent company engaged by Vigil Neuroscience to conduct a survey to understand behaviors and attitudes towards genetic testing for ALSP…
In Memorial and Honor – September 2023
ULF received donations in memorial or honorarium for the following during the month of September 2023. 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 Amy Domin Harbour Madge Johnston Honoring Amy’s mom…
TWELVE NEW ICD-10 CODES FOR LEUKODYSTROPHIES
FOR IMMEDIATE RELEASE Today marks a huge leap forward for the leukodystrophy community with the adoption of twelve new diagnostic definitions through the International Classification of Diseases – Tenth Revision. The ICD-10 code system is used by the health field to classify diagnoses, symptoms, and procedures for claims processing. While…
In Memorial and Honor – August 2023
ULF received donations in memorial or honorarium for the following during the month of August 2023. 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 Daxton Wallace Sandra Wallace Mygelybelly Karla Borge Sofia…
The United Leukodystrophy Foundation Welcomes New Executive Director
FOR IMMEDIATE RELEASE The United Leukodystrophy Foundation Welcomes New Executive Director DeKalb, IL – The United Leukodystrophy Foundation (ULF) is pleased to announce the appointment of Diane Fennimore as its new Executive Director. Fennimore is a seasoned business development executive with more than twenty years of leadership experience in mission-driven…
In Memorial and Honor – July 2023
ULF received donations in memorial or honorarium for the following during the month of July 2023. 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 in honor of Asa and her family Caitlyn Backes In honor…
In Memorial and Honor – June 2023
The ULF received donations in memorial or honorarium for the following during the month of June 2023. 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 Sofia Jan Ainger Mygelybelly Karla Borge Daxton…
In Memorial and Honor – May 2023
The ULF received donations in memorial or honorarium for the following during the month of May 2023. 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 Zane Dial Sandra Dial Michael Dial Sofia…
In Memorial and Honor – April 2023
The ULF received donations in memorial or honorarium for the following during the month of April 2023. 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 Ben Kraus LuAnn Swartzlander Ph.D. Daxton Wallace…
In Memorial and Honor – March 2023
The ULF received donations in memorial or honorarium for the following during the month of March 2023. 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 Anthony Levinsky Anonymous Daxton Wallace Sandra Wallace…
In Memorial and Honor – February 2023
The ULF received donations in memorial or honor for the following during the month of February 2023. 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 Steven Bomze Tolleson Wealth Management Sofia Jan…
In Memorial and Honor – January 2023
The ULF received donations in memorial or honor for the following during the month of January 2023. 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 Sofia Jan Ainger Sam Buck Dena &…
In Memorial and Honor – December 2022
The ULF received donations in memorial or honor for the following during the month of December 2022. 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 Adam Sledzik Alicja Sledzik Stanislaw Sledzik Aidan…
In Memorial or Honor – November 2022
The ULF received donations in memorial or honor for the following during the month of November 2022. 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 Zane Dial Jennifer L. Begue Dennis W….
In Memorial or Honor – September 2022
The ULF received donations in memorial or honor for the following during the month of September 2022. 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 AJ Woodard Wayne Woodard Aliza Husaini Faisal…
In Memorial or Honor – August 2022
The ULF received donations in memorial or honor for the following during the month of August 2022. 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 Daxton Wallace Sandy Wallace Kicks for Clark…
In Memorial or Honor – July 2022
The ULF received donations in memorial or honor for the following during the month of July 2022. 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 Daxton Wallace Sandy Wallace Mr. Chris Kelley…
In Memorial or Honor – June 2022
The ULF received donations in memorial or honor for the following during the month of June 2022. 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: Aidan Jack Seeger Elisa Seeger Ann Moser…
In Memorial or Honor – May 2022
The ULF received donations in memorial or honor for the following during the month of May 2022. 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 Forrest Leef Aliza Husaini Faisal Lokat…
In Memorial or Honor – April 2022
The ULF received donations in memorial or honor for the following during the month of April 2022. 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: Aidan Jack Seeger Elisa Seeger Arthur Williams…
In Memorial or Honor – March 2022
The ULF received donations in memorial or honor for the following during the month of March 2022. 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 Ainsley Ouszt John Rosso Catherine Rosso AJ…
In Memorial or Honor – February 2022
The ULF received donations in memorial or honor for the following during the month of February 2022. 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 Aidan Lodge Susan Lodge Alex Bouley Jane…
In Memorial or Honor – January 2022
The ULF received donations in memorial or honor for the following during the month of January 2022. 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 Ainsley Ouszt John Rosso Catherine Rosso AJ…