Get an EB Awareness Week Proclamation

Asking your mayor or governor to proclaim EB Awareness Week is a powerful way to connect with elected officials and raise public awareness of Epidermolysis Bullosa (EB) where you live.

What is a Proclamation?

A proclamation is an official declaration from a mayor or governor. These declarations recognize historical, cultural, and civic occasions, including special days, weeks, or months. That means your mayor or governor can proclaim October 25–31 as Epidermolysis Bullosa Awareness Week in your city or state. Depending on the official’s schedule, the proclamation may be read aloud at a council meeting or a community event.

Why Request a Proclamation?

A proclamation shows that your mayor’s or governor’s office cares about residents living with EB and recognizes the serious nature of the condition. It signals to the whole community that EB matters. Proclamations can also draw press attention and help keep EB in mind when local policy decisions are made.

EB Awareness Week has been federally recognized since 1984, when it was first legislated by Congress and President Ronald Reagan. A local proclamation brings that recognition home.

How to Get Started

Every city and state has its own process, but most proclamations come down to three steps.

Step 1: Prepare
  • Choose your level. Decide whether to approach your city (mayor) or state (governor).
  • Start early. Begin well before October. Depending on the size of your city or state, approval can take months.
  • Learn the process. Many government websites offer an online proclamation request form or submission instructions. Try searching “request a proclamation in [your city or state],” or call your mayor’s or governor’s office and ask who handles proclamation requests.
Step 2: Apply

Fill out any forms your city or state requires, and submit them with our proclamation draft. You’re welcome to adapt the draft as needed. View a Proclamation Draft 

  • Make it personal. Add details relevant to your community or state. If you’re comfortable, share how EB has affected you and your family, or include a local story about EB.
  • Ask for a spot on the agenda. Request that the proclamation signing be placed on the official agenda.
Step 3: Publicize 

Once your mayor or governor approves your request, find out when and where the proclamation will be signed. Then invite others in the EB Community to join you.

  • Capture the moment. Take a photo of yourself, your loved ones, or other attendees holding the proclamation with the official.

  • Share it with local media. Send the photo to your local newspaper and news outlets, along with a short note about EB Awareness Week and your connection to EB.

  • Celebrate on social media. Post your photos and story, and be sure to tag debra of America (Find us on social media).

Let us know! If you’re working on a proclamation in your city or state, we’d love to hear about it. Email us at programs@debra.org.

 

Community Member Spotlight

debra Impact Network Member, Michelle Brewer, works for the Executive and Legal Department of Lenexa, KS and shares her expertise on how a proclamation is signed in her city:

debra of America Epidermolysis Bullosa Proclamation
Mayor Michael Boehm and Michele Brewer at the 2018 EB Awareness Week Proclamation Signing
  1. Why is a proclamation important? A Proclamation helps to get information out and make people aware of important matters.
  2. What are the steps to requesting a proclamation where you live? In Lenexa this is done in the City Clerks Department. You fill out a Recognition Request Form online.
  3. How long did this process take for approval? I would submit about 30 days in advance.
  4. When approved, what can you expect? In Lenexa, someone from the City Clerk’s office will follow up and let you know what council meeting date your proclamation will be read and ask if you will be present to accept the proclamation. The Mayor will read and present the proclamation.  He takes a picture and asks you to say a few words.

  5. Any special tips? I recommend following up 1-2 weeks after you submit your proclamation just to make sure they got it.

See the Lenexa, KS EB Awareness Week Proclamation