How to Get a National Awareness Month in your State

Empower your Community with  a National Awareness Month in your State

National awareness months have already been declared for Chiari malformation and syringomyelia. Chiari is recognized during September with purple and syringomyelia is recognized in May with blue. Did you know that it’s possible to have a month of recognition declared in your own town, city or state?

This can be a powerful way to raise visibility for these causes. Here’s how you can spread local awareness:

Decide the Scope

  • Local (City/Town): Start with your mayor or city council
  • State-Level: Involves your state legislature or governor.
  • Remember, Chiari is recognized during September with purple and syringomyelia is recognized in May with blue.

Submit a Proclamation
Include

  • The condition (e.g., Chiari malformation).
  • Its impact (brief stats or personal story).
  • A request to designate a specific month (e.g., September).Why awareness is important.
  • Tip: Many cities have a form/template—check the official website of your city or state. You can often email, mail, or submit online.
  • Read our sample proclamation. (see below)

Follow Up & Engage

  • Politely follow up after a couple of weeks.
  • Offer to provide more info or attend a city council meeting.
  • Be ready to share your story—it makes a big difference.

Promote It

Once approved:

  • Share it on social media. Tag us @ASAPChiariSyringo so we can cheer you on!
  • Notify local news outlets.
  • Plan events or displays at schools, hospitals, or community centers.
  • Create your personal fundraising page and earn discounts to our annual conferences at the same time. Learn more about the ASAP LEARN points program.
  • Tip: Ask for a proclamation ceremony or photo opportunity—this can help spread even more awareness!

Get started with these sample letters:

[Your Name][Your Address][City, State, ZIP Code][Email Address][Phone Number]
[Date]

The Honorable [Representative’s Full Name][Title (e.g., State Representative, Senator, Mayor, etc.)
[Office Address][City, State, ZIP Code]

Dear [Representative’s Last Name],

I am writing to respectfully request your support in proclaiming May (or) September as Syringomyelia (or) Chiari Malformation Awareness Month in [City/State Name].

Chiari malformation (or) Syringomyelia is a serious neurological disorder that affects thousands of individuals across the country, including many in our own community. This condition often involve debilitating symptoms, such as chronic pain, neurological deficits, and mobility challenges. Despite their severity, they remain underdiagnosed and misunderstood by both the public and healthcare professionals.
As someone personally affected by this condition [you may briefly include your personal connection here—whether as a patient, caregiver, or advocate], I have seen firsthand the critical need for more awareness, earlier diagnosis, and better access to care.

By issuing a proclamation, you would help elevate visibility, encourage education, and support those living with these complex disorders. I have enclosed a draft proclamation for your consideration.

Thank you for your time and service to our community. I would be honored to speak further or assist in any way needed to move this request forward.

Sincerely,
[Your Full Name]

Chiari Malformation (or) Syringomyelia Awareness Month

WHEREAS, Chiari malformation (or) Syringomyelia is a serious neurological condition affecting thousands of individuals and families across the United States, including residents of [City/State Name]; and

WHEREAS, these conditions often result in chronic pain, neurological impairments, and significantly reduced quality of life, yet they remain widely misunderstood and underdiagnosed; and

WHEREAS, increased public awareness can lead to earlier diagnosis, better treatment options, and improved support for those affected; and

WHEREAS, organizations such as the American Syringomyelia & Chiari Alliance Project (ASAP) and local advocates are dedicated to promoting education, research, and support for patients, families, and healthcare professionals; and

WHEREAS, recognizing an official Awareness Month helps bring visibility to those living with these conditions and honors their strength and resilience;

NOW, THEREFORE, I, [Official’s Name], [Mayor/Governor/Other Title] of [City/State], do hereby proclaim the month of [September (or) May] as:

Chiari Malformation (or) Syringomyelia Awareness Month
in [City/State Name], and encourage all citizens to join in supporting efforts to improve the lives of those affected.

IN WITNESS WHEREOF, I have hereunto set my hand and caused the
Seal of [City/State Name] to be affixed this [Day] of [Month, Year].

[Signature][Official’s Name][Title]

Dear [Building Manager’s Name],

I am writing to you on behalf of the American Syringomyelia & Chiari Alliance Project to request your support in lighting up [Building Name] in purple during the upcoming Chiari Malformation Awareness Month, which will take place during the month of September. This initiative aims to raise awareness and show solidarity for Chiari malformation, a serious neurological condition where the lower part of the brain, called the cerebellum, extends into the spinal canal. Chiari malformation affects people of all ages, but many are diagnosed in childhood or young adulthood. The condition is often misunderstood and can be difficult to diagnose, which can lead to delays in treatment and unnecessary suffering.

By lighting up [Building Name], we can visually convey our community’s commitment to supporting those affected by Chiari malformation and promote awareness on a larger scale. I am happy to discuss any logistics or coordination required for the lighting and to work with any preferred vendors or contractors you may have for such events.

Thank you for considering this request. I am confident that illuminating [Building Name] in purple will make a powerful statement in our community and significantly contribute to the success of Chiari Malformation Awareness Month. I am happy to provide any additional information or meet with you to discuss this further.

Sincerely,

[Your Full Name]

Light up a local building to spread awareness or announce your proclamation!

Spread the colors blue and purple throughout your hometown this during May and September by lighting up a local building. Use our sample request below and share your colorful buildings with us.

Syringomyelia Awareness Month

Dear [Building Manager’s Name],

I am writing to you on behalf of the American Syringomyelia & Chiari Alliance Project to request your support in lighting up [Building Name] in blue during the upcoming Syringomyelia Awareness Month, which will take place during the month of May. This initiative aims to raise awareness and show solidarity for Syringomyelia, a serious neurological condition where Syringomyelia affects people of all ages, but many are diagnosed in childhood or young adulthood. The condition is often misunderstood and can be difficult to diagnose, which can lead to delays in treatment and unnecessary suffering.

By lighting up [Building Name], we can visually convey our community’s commitment to supporting those affected by Syringomyelia and promote awareness on a larger scale. I am happy to discuss any logistics or coordination required for the lighting and to work with any preferred vendors or contractors you may have for such events.

Thank you for considering this request. I am confident that illuminating [Building Name] in blue will make a powerful statement in our community and significantly contribute to the success of Syringomyelia Awareness Month. I am happy to provide any additional information or meet with you to discuss this further.

Sincerely,

[Your Full Name]

 

 

Commonly Asked Questions:

Should I write to the city mayor and the state governor?

It’s a good idea to request awareness month proclamations at multiple levels of government. A city-level proclamation from the mayor helps engage the local community and can lead to press coverage or community events. A state-level proclamation from the governor offers broader visibility and may influence healthcare providers, schools, and advocacy organizations across the state.

Proclamations are usually non-binding and symbolic, so requesting from both doesn’t conflict—they complement each other.

Should I include both Chiari and Syringomyelia in the letter/proclamation?

You should consider including both disorders in your awareness request. Chiari malformation and syringomyelia are closely linked, and many individuals with one may also have or develop the other. Raising awareness for both conditions helps educate the public and medical community more effectively, while also streamlining your efforts—eliminating the need to submit separate requests. You can note that May is Syringomyelia Awareness Month and September is Chiari Malformation Awareness Month, and ask your city to recognize either one or both.