Help us recognize August 3rd-7th, 2026 as ALSP-CSF1R Awareness Week in your state!
Be an advocate for ALSP and CSF1R related leukoencephalopathy.
ALSP-CSF1R Awareness Week
Over the past few years, our community has had the concept of an ALSP Awareness Month, but it's been inconsistent: first it was March, then it was May. It has also never been officially recognized by any state apart from PA, and even PA only recognized it for one year, 2024.
Then we realized something big:
May is already ALS Awareness Month.
ALS and ALSP… the names are similar. The diseases are not! The confusion is real, and families deserve clarity.
So here’s our solution:
ALSP is most often caused by mutations in the CSF1R gene, found on chromosome 5, section 32. So our community is proposing something new, clearer, and rooted in the biology: The 32nd week of the year, usually the first week of August, becomes ALSP‑CSF1R Awareness Week.
5 days. Chromosome 5. The 32nd week. Section 32. It fits. It’s meaningful. It’s memorable.
To make this official, we need YOU.
Starting three months before August, we’re asking the ALSP community to contact local and state legislators to recognize the first week of August as ALSP‑CSF1R Awareness Week. We have toolkits available that can help guide you through the process and provide the resources you may need to request that your public officials proclaim The First Week of August, as ALSP-CSF1R Awareness Week in your city, town, or state.
Let’s make awareness accurate, consistent, and ours. Let’s give ALSP the recognition it deserves!
How can you get involved?
Reach out to your local and state legislators to recognize the first week of August as ALSP-CSF1R Awareness Week. Resolutions and proclamations are simple, meaningful ways to mark this week in your community and help raise awareness of ALSP.
The main difference between a resolution and a proclamation is how they’re issued:
A resolution is a formal statement that’s reviewed and approved by a legislative group.
A proclamation is an official declaration, usually issued by a leader without a vote.
You can pursue either one—or both. Each option helps raise awareness, build relationships with local leaders, and support future efforts to improve care and increase research funding for ALSP.
New to proclamations and resolutions? You’re in the right place. Getting involved is a powerful way to raise awareness and begin advocating for meaningful change.
Start by reaching out to GliaConnect at info@gliaconnect.or to share your plans. We may even be able to connect you with other advocates in your state.
From there, explore our Proclamation and Resolution Toolkits for step-by-step guidance to help you through the process.
