Make May officially Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Month in your state, city, or other local government by taking part in the Proclamation Challenge!
A proclamation is a formal public statement and an official announcement of EDS and HSD Awareness Month in your local area. Follow these easy steps, and use our handy template and tips to spread EDS and HSD awareness in your community!
Check the status of your country or state below. If a proclamation is already in progress, submit your information to be connected with the local group or individual from your state.
If your state or local government isn’t listed, then MAKE IT OFFICIAL and request a proclamation!
Here are the most common steps to request a proclamation from the governor or mayor; however, some states and cities may vary regarding proclamation procedures.
- Start by locating the appropriate state or city government website
- You may find a tab called “Mayor’s Page” or “Governor’s Page.” Also look for “Ceremonial” or “Forms” on the navigation menu.
- If you do not see any of these, try using the site’s search feature with the word “proclamation.”
- Another option is the website’s “Contact Us” link. This area allows you to write a brief message such as: How do I ask the governor to issue a proclamation declaring May 2021 Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month?
- A staff person will probably reply and email a form to complete. Email the form back for an official signature.
- If no form is available, use the proclamation template provided by The Ehlers-Danlos Society. Mail or email to the mayor’s or governor’s office along with a formal request from your state or district association.
- Follow up with a phone call just to be sure your request arrived.
- When you have confirmation that the proclamation has been signed, contact local media to suggest a news item, interview, or photo with the mayor or governor and affiliate representatives.
“I care so much about being an advocate for EDS and HSD, and for individuals with these conditions.
“My focus as an advocate is going to be on complex issues-chronic illness and pain, high-risk pregnancies, end-of-life planning, hospice and helping people navigate preparing for Social Security disability.” ~ Ashton
“Thrilled to say that I have secured a promise from the mayor of my little city to issue a proclamation for May 2020 as EDS and HSD Awareness month here! They just need to have a City Council meeting to make it happen.
Someone already had the state wrapped up (YAY) so I thought I’d work a little closer to home. Trying to put together a weekly Q&A for my FB friends as well.” ~ Judy
“When I saw the Proclamation Challenge, I knew that this was a challenge that I had to complete. I am constantly trying to find ways to spread awareness for Ehlers-Danlos Syndrome, so I started at the top with the governor of South Carolina! It wasn’t easy. I don’t think I stopped smiling the entire day. I am currently reaching out to local news networks to try to get media coverage for the proclamation.” ~ Julianna
“#myEDSChallenge is bringing awareness to this rare disease that I was diagnosed with last year. I have always been a patient advocate for all health concerns. It has even led me to speak for Stanford University on two occasions. When I learned that Maryland did not have a Proclamation, I applied for one to present at a medical conference I was supposed to speak at this month. Unfortunately, due to COVID-19, that conference was canceled. This is the first of many things I plan to do to bring awareness to EDS. It took me approximately a decade in order to be diagnosed correctly.” ~ Ashley
“Vermont has officially passed bill HCR170, recognizing May as Ehlers-Danlos Awareness Month! I was diagnosed in December of 2018 and I’m a proud zebra.” -Taylor