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 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?
We need to get 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
- 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.
- 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.
- Make a follow-up call to the governor’s office if you receive no information within 2-3 weeks of sending your request.
- 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.
- Be sure to send a follow-up thank you to the governor for the proclamation.
What Else Can You Do?
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, and #autoinflammatoryaugust. 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.
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.
This year, we have a fundraising program for Autoinflammatory Awareness Month to raise more money to support research and our efforts with awareness and support for patients. You may see the “click here” pop up linking to the donation portal when you visit the blog. Please consider making a donation to support our efforts! All donations are tax deductible. You can donate anytime for this campaign here.
We also have a virtual 5K fundraiser that you can do anywhere. There will be prizes for various levels of fundraising and individual donations. We will be using our razoo fundraising platform; or you can set up your own team to get your friends and family involved to raise funds to support the Autoinflammatory Alliance. With a virtual 5K, you can do your walk or run on your own or with friends anywhere and at anytime that you want!
This year, our goal is to raise a lot of money to support a research fund to help get more patient-centered research for autoinflammatory diseases. Read more about it on our Virtual 5K blog post.
You can set up a Beat the Heat of Autoinflammatory Diseases Ice Cream Fundraiser in your area – click here for more details.
Keep checking for more updates here and on our Facebook page. We will post events and more ways you can get involved.
Or simply ask friends and family to make a donation in yours or your child’s honor for Autoinflammatory Awareness month. Donations can be made here. 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.
The Autoinflammatory Alliance is a nonprofit organization dedicated to helping those with autoinflammatory diseases.