August is Autoinflammatory Awareness Month!

Click here to add this International Autoiflammatory Awareness Twibbon to your Facebook or Twitter profile.

The Autoinflammatory Alliance declared August to be Autoinflammatory Awareness Month in 2015. This is the month that the Autoinflammatory Alliance and patients with any of the autoinflammatory/periodic fever syndromes, such as PFAPA, CRMO, CAPS, HIDS, FMF, TRAPS, SURFS, and others, can work together to fundraise for research and education and bring more awareness to these very rare diseases.

Why August? August is generally the hottest month for many regions in the Northern Hemisphere. So it seems a perfect month to raise awareness about these syndromes that cause intense systemic inflammation and for many very high fevers that may rival the high temperatures in your area.

Disease awareness months lead to an increase in patients getting a proper diagnosis and treatment, help raise funds for research, and offer support and community for patients. We want Autoinflammatory Awareness Month to be all of these things, but we need your help. Keep reading to learn what you can do.

What Can You Do?

2016 Autoinflammatory Symposium

Supporting and helping to coordinate the 1st Symposium of Autoinflammation and Immmune-dysregulation held at Walter Reed National Military Medical Center and in collaboration with the National Institutes of Health was just one of the many Autoinflammatory Alliance 2016 highlights. Read more of what we accomplished in 2016 here.

Fundraise for Autoinflammatory Education and Research

Donations support the efforts of the Autoinflammatory Alliance to increases awareness and education on these diseases, help patients get a proper diagnosis sooner, and raise funds for research. Some of our efforts include this blog and other websites, the development and maintaining of the Autoinflammatory Database that is free for doctors to use, and attendance at rheumatology and autonflammatory conferences aound the world. Click here to learn more about our history. Click here to see all we accomplished in 2016!

Support the Autoinflammatory Alliance and you will help:

  • Fund more research-the more we raise, the more we can accelerate new discoveries and help for patients
  • Increase awareness in the United States and internationally about autoinflammatory diseases
  • Produce more educational materials in print and digitally for patients and medical professionals
  • Translate educational materials into more languages
  • Keep the Autoinflammatory Database updated
  • Maintain and update our saidsupport.org blog and the Autoinflammatory.org website

Donate to the Autoinflammatory Alliance Here

Strawberry Ice Cream Cone

Coordinate a Beat the Heat of Autoinflammatory Diseases fundraiser with your local ice cream shop – raise money and educate while beating the summer heat with ice cream!

Here are some fundraising ideas:

 

In 2015 the governor of West Virginia proclaimed August Autoinflammatory Awareness Month.

 

Get a Governor’s Proclamation

We want each state to recognize August as Autoinflammatory Awareness Month. To meet this goal, we invite anyone to contact their state governor to request they issue a Governor’s Proclamation. You can do this as an individual or if you live in a region with several other families, make a bigger impact by working together and contacting your governor as a group. And please share with us your efforts! You can give us updates on our Facebook page here.

Currently the states of Texas, South Carolina, and West Virginia recognize August as Autoinflammatory Awareness month.

Initiating Governor’s Proclamation

  1. Combine the cover letter, sample proclamation, and any other necessary materials into a sealed envelope. Click here for a PDF of a sample proclamation and cover letter you can use.
  2. Send your request to the address provided in the State Governor’s Contact list. U.S. mail should be used unless another form of communication (fax, e-mail, etc) is mentioned in your state/territory guidelines.
  3. Make a follow-up call to the governor’s office if you receive no information within 2-3 weeks of sending your request.
  4. Seek publicity after the governor approves the proclamation. It is great to have a state adopt the proclamation; it is even better to have the local newspaper report the action. Send a representative to the meeting when the proclamation is being adopted. Frequently, the governor’s office will present a quality copy to an appropriate recipient. Take photos.
  5. Be sure to send a follow-up thank you to the governor for the proclamation.

Autoinflammatory Awareness Month is AugustRaise Awareness and Educate Others on Social Media

Sharing information on Facebook, Twitter, Instagram, and other social media sites and holding fundraisers for the Autoinflammatory Alliance are some more ideas of how you can help.

Be sure to use the autoinflammatory hashtags:

#autoinflammatory #autoinflammatoryawareness

#autoinflammatoryalliance #notjustafever

#morethanafever

Don’t forget to link back to our Facebook page here or our Twitter page here!

Autoinflammatory Awareness graphics on this page may be downloaded to use for awareness efforts on social media, blogs, and websites. The graphic may not be altered without written permission. We ask that if used on a blog or website that a link be included to one of our websites or Facebook page.

Awareness_1

Use this graphic for your social media profile picture!

Become an Advocate

In August, all the legislators return to their hometowns for a few weeks. You can set up an appointment to meet with your elected officials when they are in your area, and this is a very good way to start advocating for issues that concern our community.

You can contact your elected officials through this great system with the Rare Disease Legislative Associates (RDLA) to email them about issues that concern you.

Keep checking for more updates here and on our Facebook page. We will post events and more ways you can get involved.

Click here for more ideas on how you can help the Autoinflammatory Alliance at any time of the year.

*This post updated July 2017


The Autoinflammatory Alliance is a nonprofit organization dedicated to helping those with autoinflammatory diseases.

Donate now to help with awareness, education, and research for these rare diseases.

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