News

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…

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…

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…

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…

Arne

By Ruth Tindugan, ablethroughlife@gmail.com What sounded like the screams of a duckling pulled me out of the deep pond of sleep. At one o’clock in the morning, Arne was yelling again. I nudged my husband, but he did not budge. Most of the time, I would stagger into his bedroom…

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 – 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…

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