Sharing a Proclamation Kit

Publicity helps bring awareness to unknown conditions and the stories of individuals impacted by them. These stories can be used to help change lives, encourage others, and point them to valuable resources. Publicity also demonstrates to your local government officials that you are grateful for the issuing of the proclamation and for their role in helping put the awareness into action.

How to Request Media Coverage

1. Collect media outlet contact list

Develop a list of local media contacts to be used in publicizing the proclamation once it is signed. Look for local newspapers, television stations, and radio stations. Oftentimes their websites might have an option to contact them for potential news stories. You can also reach out to them on social media.

2. Issue a press release

Once the proclamation has been issued, send out a press release. You can use our sample press release or work with the specific media outlet or journalist for the story development.

Woman Reading the Morning Paper at the computer.

3. Include you or your group in press photos

Include a photo of your group representatives with the public officials, you speaking to the group, yourself with the proclamation, or a picture of the proclamation to be included in the story. Be sure to fill out the Photo Release for DSN having everyone in the picture sign and indicate their permission for it to be used.

4. Follow up

Follow up with media outlets after a few days. Don’t be discouraged if you don’t hear back from anyone right away. Persistence will pay off as you check in to see whether they will run the story.

Sharing Your Story on Social Media

1. Share your story

Use platforms such as Facebook, Twitter, Instagram, and others to celebrate the issuing of the proclamation and your involvement. Post about it on your blog, if you have one. You can use the Top 10 Facts document from our supporting documents page, or you can write your own post and share your personal story.

2. Use awareness hashtags

In your post, use awareness hashtags to help identify the story. Some recommended hashtags can be seen below:

#EDS #EhlersDanlos #EhlersDanlosAwareness #myEDSstory #myHSDstory #myAwarenessStory #ZebraStrong

#GP #Gastroparesis #GPStrong #myGPstory #GPAwareness #myAwarenessStory

#Chiari #ChiariMalformation #ChiariAwareness #myChiaristory #ChiariCourageous #ChiariStrong

#Dysautonomia #DYSAwareness #DYSstrong #myDYSstory #DysautonomiaAwareness #myAwarenessStory

3. Share your story with us at DSN!

When you share your story on social media be sure to tag us or let us know. We would love to share your success on our main Facebook page and in our Facebook groups as well! Email pictures of the proclamation ceremony, photos or scans of the proclamation document, and any links to media stories about your state or local proclamation to media@dysautonomiasupport.org. Let us know who is in the photos, where the ceremony took place and fill out the photo release form. Each time one of us achieves an awareness proclamation, it inspires other patients and caregivers to do the same in their hometowns!

4. Ask the government or elected officials if they will post about the awareness month on their social media platforms.

Sometimes they will ask you to write up a short post for them about the proclamation. Make sure they direct people to www.dysautonomiasupport.org for more information. If you need help with what to include in this post, reach out to media@dysautonomiasupport.org.

5. Be sure to thank everyone who has helped you by sending emails or even mailing cards.

We want to thank YOU for being part of our Awareness Army and doing your bit to help spread awareness for Dysautonomia, Connective Tissue Disorders, Gastroparesis, Chiari Malformation, and Mast Cell Disorders.

If you are not quite ready to share your proclamation yet, click here to return to the process for obtaining a proclamation page.

DSN Volunteer - Leslie - and her government official, with a Dysautonomia Awareness Proclamation.

TESTIMONIALS

“Obtaining a proclamation declaring October as Dysautonomia Awareness month was incredibly easy. After personalizing the letter and sending it to my state Governor and local Mayor, I was able to obtain proclamations from both. My local Mayor presented our proclamation during the City Council Meeting attended by many members of the public and a few local individuals with dysautonomia. It was a great time to get together, spread awareness, and officially recognize dysautonomia awareness month.”

- Leslie K -

Delaware