In Memorial and Honor – April 2024
ULF received donations in memorial or honorarium for the following during the month of April 2024. 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 Brad & Lance Yotti James Bowersett Sue Bowersett…
In Memorial and Honor – March 2024
ULF received donations in memorial or honorarium for the following during the month of March 2024. 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 BRAMBLEBOX TURTLE Melissa Kapoor Daxton Wallace Sandra Wallace…
Orchard Therapeutics Outlines U.S. Launch Plans for Lenmeldy™ (atidarsagene autotemcel), the Only Approved Therapy for Children with Early-onset Metachromatic Leukodystrophy
The ULF is thrilled to share this press release from Orchard Therapeutics regarding their new FDA approved therapy for MLD! “Lenmeldy is truly a paradigm-shifting medicine and has the potential to stop or slow the progression of this devastating childhood disease with a single treatment, particularly when administered prior to…
FDA Approves First Gene Therapy for Children with Metachromatic Leukodystrophy
The ULF is shared to be able to share this press release from the Food & Drug Association: “Today, the U.S. Food and Drug Administration approved Lenmeldy (atidarsagene autotemcel), the first FDA-approved gene therapy indicated for the treatment of children with pre-symptomatic late infantile, pre-symptomatic early juvenile or early symptomatic…
In Memorial and Honor – February 2024
ULF received donations in memorial or honorarium for the following during the month of February 2024. 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 Adele Moss Claudette Alice Collier Benjamin Rosenberg Ari…
Two ALSP Studies Now Recruiting
The ULF is happy to share this information on behalf of Vigil Neuro. Contact information is listed below for more information. Natural History Study in Adult-Onset Leukoencephalopathy With Axonal Spheroids and Pigmented Glia (ALSP) A Study of VGL101 in Patients With Adult-Onset Leukoencephalopathy With Axonal Spheroids and Pigmented Glia If…
In Memorial and Honor – January 2024
ULF received donations in memorial or honorarium for the following during the month of January 2024. 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 Kenan Spencer Witczak Jennifer…
Forge Biologics Announces Positive FBX-101 Clinical Trial Update in Patients with Krabbe Disease Identified by Newborn Screening Ahead of RUSP Vote
The ULF is happy to share this press release on behalf of Forge Biologics regarding their clinical trial for patients with Krabbe. Here is a preview but click the link below to read the full press release. UPDATE: As of Tuesday, January 30: The ACHDNC has recommended the addition of…
In Memorial and Honor – December 2023
ULF received donations in memorial or honorarium for the following during the month of December 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 Adam Sledzik Alicja Sledzik AJ Woodard Anonymous Alec…
Daniil’s Story
Daniil Zamorin wrote this story, but is a native Russian speaker. The ULF has helped Daniil edit his story to be more easily understood by an English-speaking audience. He welcomes people to reach out to him, and the ULF would be happy to facilitate the connection. Please email office@ulf.org to…
In Memorial and Honor – November 2023
ULF received donations in memorial or honorarium for the following during the month of November 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 815-748-3 IN HONOR OF Zane Dial Michael Dial Sandra Dial The Bouley…
In Memorial and Honor – October 2023
ULF received donations in memorial or honorarium for the following during the month of October 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 Jan…
Minoryx Announces Patient Enrollment of their CALYX Trial
The ULF is happy to share this press release on behalf of Minoryx regarding their CALYX Trial for patients affected by cALD. Here is a preview but click the link below to read the full press release. “Minoryx Therapeutics, a registration stage biotech company focused on the development of therapies…
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…