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 Walker Leon Machado Wilcox Lee …
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 Krabbe disease to the RUSP! …
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 Jump Leesa Jump James Jump …
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 …
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 …
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 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 …
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 …
