Lupus Awareness Month Recap
by Chris Milazzo
Lupus Awareness Month (LAM) is a powerful annual reminder of the importance of keeping lupus – and everyone it impacts, past and present – at the forefront of our minds. We are in constant awe of our supporters, who are always ready to lend a helping hand or serve as fundraising powerhouses. We are incredibly thankful for their dedication.
The Ohio Commission on Minority Health was an incredible ally in amplifying our message throughout May. Thanks to their support, four vibrant billboards went live across Cuyahoga County, sparking crucial conversations and inspiring people to learn how lupus affects our community.
We took every opportunity to spark conversations and spread awareness throughout May! Our team visited several community health fairs, connecting with diverse groups to share vital education about lupus. Additionally, our Lead Patient Navigator, Rita, attended specialized physician conferences – building valuable connections with doctors to share our mission and reinforce how we can serve as a trusted resource for the patients in their care.
Our community stepped up in a big way this month with some amazing third-party fundraisers! Kelly Perhach hosted her 3rd Annual Links Fore Lupus Golf Outing in Ravenna, OH, bringing people together for a fun-filled day of golf, great food, and awareness. Kelly is an absolute rockstar for our foundation. She works completely around the clock, pouring her heart and soul into everything she does to ensure our community has the power to keep moving forward.
In Westerville, Mykayla Williams held a 2-day Dine-To-Donate Event At Bob Evans, where she successfully educated patrons on why lupus awareness matters. To wrap things up, James Kakos organized a fantastic Ride For Lupus motorcycle event in Lancaster, rallying the local community to spread the word about lupus.
We would also like to thank all the towns and cities in Ohio for claiming May to be Lupus Awareness Month, including Solon, The Village of Valley View, Parma, Parma Heights, Cleveland Heights, Highland Heights, Warrensville Heights, Mayfield Village, Mayfield Heights, Maple Heights, the City of Toledo, and Garfield Heights. We thank you for your recognition of a disease that can impact anyone, anywhere.
Ladies Living With Lupus
The first weekend of May, we kicked off Lupus Awareness Month with Ladies Living With Lupus, a dedicated space for patients and caregivers to share their feelings and exchange insights on what is working well in their journeys. Over 25 patients gathered at Valenti’s Ristorante in Broadview Heights for an afternoon filled with heartfelt conversation and great food. Our hope for this event was that patients would walk away with valuable new information to help simplify their lupus journey. Participants noted that their favorite part was simply socializing within such a close-knit community, which beautifully demonstrates the strength of the lupus community and its capacity to show up and listen when others need it most.
Put On Purple Day
May 10th was World Lupus Day and POP Day (Put On Purple Day)! Lupians across the state of Ohio wore their best purple to drive awareness for the disease. We want to thank all of our supporters who shared their fantastic purple outfits with us on social media!
Lupus Live! Biologics and Cardiac Care
On May 16th, we sustained our strong awareness momentum with the Lupus Live! Biologics and Cardiac Care summit at our office in Brecksville. Led by doctors from Cleveland Clinic, Dr. Emily Littlejohn, Dr. Heba Wassif, and Dr. Laura Ferreira Provenzano, patients and caregivers gathered to discuss the latest advancements in lupus treatment and long-term health management. Presentations offered deep dives into emerging biologic therapies for Systemic Lupus Erythematosus (SLE), preventative cardiac care strategies for individuals with SLE, and new therapies for lupus nephritis.
Each presentation was followed by an interactive Q&A session with the doctors. We are immensely grateful to the Ohio Commission of Minority Health, GSK, Genentech, Cleveland Clinic, and Biogen for sponsoring this vital event. We take great pride in educating and informing patients and caregivers, and we will always provide spaces where patients can voice their concerns directly to the specialists who can help them most.
Walk to End Lupus Now® – Toledo
The following day, we trekked west to visit our friends in Toledo for our first Walk to End Lupus Now® event of the year! The Walk to End Lupus Now® is a nationwide, peer-to-peer fundraising initiative aimed at raising awareness while creating a supportive space for patients to connect with one another. The Lupus Foundation of America, Greater Ohio Chapter has worked tirelessly for decades to cultivate a fun, uplifting environment that celebrates Lupians and their incredible accomplishments.
The walk took place at Ottawa Park, where attendees gathered around 10:00 AM to kick off the festivities. The emcee, Montrice Terry, kept energy levels high and everyone excited for lupus awareness by spinning great beats throughout the afternoon. The walk officially commenced around 11:00 AM. Our CEO, Suzanne, and our powerhouse fundraiser, Rachelle Roy, led the way with an entire army of lupus warriors behind them. Rachelle is a true firecracker; you may know her as your favorite mail carrier, but to us, she is someone who consistently goes the extra mile to spread our mission and ensure everyone is having fun. Together, we raised over $7,000.00 for lupus, and we could not be more grateful to Rachelle’s phenomenal efforts. We want to thank every single person who came out to Ottawa Park to support us. Whether you live with lupus or are supporting someone who does, every step mattered in our collective effort to find the cause and a cure.
Paint It Purple
To close out Lupus Awareness Month, we gathered at our Brecksville office for Paint It Purple, where we explored art therapy and created beautiful memories together. Participants used art as a creative outlet to express their thoughts and emotions surrounding life with lupus. Attendees were encouraged to share their artwork and the stories behind them, helping others gain a deeper understanding of the lupus journey. We would like to extend a special thank you to Jackie Amato, MA, ATR, LPC for leading our group and helping us create a beautiful, long-lasting memory.
As we close out the month of May, we are reminded that support for lupus doesn’t just exist in May. It exists every day of every year. From the intimate conversations at Ladies Living With Lupus, to the steps taken at the Toledo walk, every event this month highlighted the power of the lupus community. Whether we were learning from a panel of qualified doctors or expressing our thoughts with art, the message remained clear: no one has to fight this journey alone, you have a whole army of people behind you. We thank all of our sponsors, volunteers, medical partners, and every single lupus warrior for showing up, putting on purple, and speaking out. Together, we can help build a better future for lupus and the people it impacts.