Q&A with Co-Chair of the National Scleroderma Foundation’s Patient Advisory Board, Evamarie Cole
Each year in June, the National Scleroderma Foundation participates in Scleroderma Awareness Month, culminating on World Scleroderma Day on June 29.
The month is spent working to increase awareness of scleroderma and advocating for those affected by this life-threatening disease through various concerted efforts, including building light-ups and government proclamations.
To help our scleroderma community understand just what goes in to securing these crucial light-ups and proclamations, we sought the advice from the Co-Chair of the Foundation’s Patient Advisory Board, Evamarie Cole.
Q: Do you have any advice regarding how people can/should go about getting a proclamation from their local areas for Scleroderma Awareness Month?
A: First and foremost, you need to be a resident of the state. For proclamations, some states have online forms, but not all do. If your state falls into the latter category, the best route you can take is to reach out to your local political representatives. As a constituent of their district, they are the main lead to your governor, senator and/or mayor. Local politicians can direct you to the appropriate person to grant your request.
Q: What has it meant to you to see your town lit up in support of the disease you work so hard to fight and advocate for?
A: It was amazing and emotional to see the teal lights illuminate the sky! Our community was finally seen and heard. Even though it was only one evening, we mattered, and we were recognized. In that instant, I knew my work must continue!
Q: What about for building light-ups?
A: For light-ups, a little research is required, but most of the time, you don’t even have to leave your house to do it! Start by searching for building lightings in your state and be sure to check other nonprofit organizations that do lightings as well.
This may streamline your search process. To get a building lit up in teal for scleroderma awareness, you’ll need to contact the managing partner of the building and submit a formal request. Some buildings may have online request forms while others require you to search for general inquiry emails. In your email, be sure to share your scleroderma story and the National Scleroderma Foundation’s mission, along with details about our Awareness month/day.
For governmental buildings and bridges, the request must be approved by your local mayor (for a city) and the governor (for the state). I highly suggest joining your local civic association since many politicians attend these meetings. It provides a great opportunity to get to know them, share your story and ask for their support.
Q: Do you have any other helpful tips for your fellow scleroderma warriors?
A: Do not get discouraged! Not everyone will say yes right away – it took two years for my first proclamation and lighting. With a rare disease, it takes time to educate people and longer for them to fully understand and become sympathetic to our cause.
So, always keep communication open and keep a positive spirit. If your local politician is only willing to give you a letter, a citation, or an executive order, accept it – it’s the next best thing, and it still shows support for our cause.
Q: Do you have any big 2024 Scleroderma Awareness Month plans?
A: For 2024, I am focusing on lighting skyscrapers in Midtown Manhattan! Along with the Helmsley Building, the Summit Building has agreed to work with the National Scleroderma Foundation.
I am hoping to work with others like the Empire State Building and trying to include lightings in New Jersey and Connecticut as well. I would LOVE to get some media coverage to expand awareness efforts.
To learn more about how to secure Scleroderma Awareness Month light-ups and proclamations, watch the Foundation’s training video: Proclamations & Light it Teal 2024