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 be connected to Daniil. Hello, […]
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 Family Bernard Levine M.D. Sofia
In Memorial and Honor – November 2023 Read More »
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 Ainger Sam Buck Anonymous Support
In Memorial and Honor – October 2023 Read More »
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 for orphan central nervous system
Minoryx Announces Patient Enrollment of their CALYX Trial Read More »
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 IGNITE, our Phase 2 clinical
Vigil Neuro: ALSP Community Letter Read More »
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 the community. Results from
ALSP Community Survey: Genetic Testing Read More »
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 as a birthday gift Carlee
In Memorial and Honor – September 2023 Read More »
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 this system is largely used
TWELVE NEW ICD-10 CODES FOR LEUKODYSTROPHIES Read More »
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 Jan Ainger Zane Dial Sandra
In Memorial and Honor – August 2023 Read More »
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 organizations. She has a deep
The United Leukodystrophy Foundation Welcomes New Executive Director Read More »
