Lupus Awareness Month

BY ALEX ACEVEDO

May is an important month for people around the country. Mother’s Day, prom, graduation, Memorial Day, and the unofficial kickoff of wedding season and summer! For all of us in the lupus community, it means much more. May is also Lupus Awareness Month (LAM), filled with excitement, chaos, and joy for us at the chapter. We build our events and programming schedule around what we are doing in May! While LAM was created to spread awareness, we also try to make it a special time for our fellow lupus warriors as well. So, with that in mind, we want to provide a brief recap of what we did this year!

Scaling the Lupus Summit

On May 4th we held our Scaling the Lupus Summit in collaboration with Cleveland Clinic! This hybrid event was held at Cleveland Clinic’s Administrative Campus in Beachwood and was accompanied by a live stream for those in other parts of the state. Nearly 100 combined attendees listened to experts from the Cleveland Clinic talk about Lupus Nephritis, Cardiology, Dermatology, and new research! We want to thank the Cleveland Clinic, Ohio Department of Health, Ohio Commission on Minority Health, GSK Pharmaceuticals, Aurinia Pharmaceuticals, and Mallinckrodt Pharmaceuticals for making this event possible. Special thanks to our speakers: Dr. Laura Ferreira-Provenzano, Dr. Samuel Kelly, Dr. Anthony Fernandez, and Dr. Emily Littlejohn for providing such excellent information and for answering patients’ questions!

Proclamations

Each year our patient navigators and facilitators reach out to local mayors’ offices across the state in hopes of them issuing a city proclamation officially declaring May as Lupus Awareness Month in their city! This year was especially fruitful as we received blank proclamations. Thank you to the cities of Waterville, Toledo, and Findlay.

Also, to Cuyahoga County and also Governor DeWine and the State of Ohio!

World Lupus Day/ Put on Purple Day

May 10th is World Lupus Day also referred to as Put On Purple Day! Every year we encourage all of our Lupus Warriors and their supporters to wear as much purple as possible to shed light on lupus! As always, patients across Ohio answered the call and showed up in a big way! We loved seeing all of the pictures shared on social media throughout the day. In addition, we are always looking for buildings or bridges throughout the state that we can light up for the big occasion. This year we were honored that the Terminal Tower in Cleveland, and Fountain Square in Cincinnati lit up purple for lupus! Amazingly, we were even given a massive, purple-tinted light show courtesy of Mother Nature and the Aurora Borealis!

Statewide Awareness Campaign

As you have heard us mention before, our chapter is fortunate to have the continued support of our state legislature. A portion of the funds provided by the Ohio Department of Health and the Ohio Commission on Minority Health are used to run statewide awareness campaigns across various platforms. In May you may have seen our “Someone You Know” campaign on billboards, streaming services, or cable. We also ran ads on radio stations across the state!

Advocacy

The most exciting thing we did for Lupus Awareness Month was join fellow advocates in Washington DC. It is always a privilege to meet with any legislator at the local, state, or federal level. When we join the LFA National office and chapter network it is incredibly special. Suzanne, our CEO, was joined by Nikki Roberts, Rosie Chapman, Ariel Shelton, and many other patients and caregivers from Ohio. They met with many congress members in both the House of Representatives as well as the Senate. The purpose of these trips is to advocate for continued and increased funding for lupus research from organizations like the Center for Disease Control, the National Institute of Health, the Department of Defense, and other health organizations. Collectively, the LFA had over 300 advocates attend in person and many more participated virtually. While trips like these can be exhausting, especially for patients, they always seem to serve as inspiration and reignite our passion to eradicate this terrible disease.

While it was a busy May, it was exciting and rewarding for us to get out of the office and into communities to see all of you. Now it’s time to shift our attention and push full steam ahead into the walk season! Let’s harness the energy and momentum built off a successful May to make this year’s walks our biggest ever! In case you missed the announcements we will have walks in both Columbus and Cleveland this year. The Columbus

Walk To End Lupus Now® returns on Saturday, August 17th, 2024, at the Center of Science & Industry (COSI). The Cleveland Walk To End Lupus Now® is Saturday, September 14th, 2024, on Old River Road in the Flats East Bank! Registration is open for both walks and is found at lupusgreaterohio.org/walk.