To gain more recognition for GM1 Gangliosidosis, we are endeavoring to have May 23, 2022 proclaimed as International GM1 Gangliosidosis Awareness Day by state and federal agencies. You can help by submitting a proclamation request to your state or federal representative. 

Steps to Submit a Proclamation Request

  1. Determine where you will submit your request. You can submit these requests at a city, county, state, or federal level (or all of the above!).
  2. Use this [spreadsheet/pdf] to find your state’s proclamation information or search for the proclamation request form from your city or county, or state. You can find the federal proclamation request form here. 
  3. Gather your materials and write your letter. When you submit your request, you will need to include a cover letter and the International GM1 Gangliosidosis Awareness Day WHEREAS clauses:
  • Template Proclamation Request Cover Letter
  • WHEREAS Clauses 
  1. Submit your proclamation request form – fill out the form or send the email. 

*In the submission form, we recommend filling in any “Deadline” fields with May 16, 2022

**We recommend submitting the request as soon as possible, or on or before Thursday, March 24, 2022 (60 days prior to May 23rd), as requests typically need to be submitted 60-90 days before the observance day. 

  1. After you submit the form, contact us at to let us know so we can keep our proclamation tracking database updated and accurate. 
  2. Please send a photo of the proclamation to for our files. 
  3. We sometimes have some families take a picture with the signed Proclamation, and/or with the Political Representative if that can be arranged and even presenting the Proclamation with family on the steps of Capitol Hill… we love to share these photos through social media so please send them in if you take them!

If you have any questions, please contact us at

We appreciate you taking the time to help spread awareness about GM1 Gangliosidosis!