With the end of 2024 nearing and a new year approaching, it’s time to reflect on the past year at the Lupus Foundation of America, Greater Ohio Chapter.
The Walk to End Lupus Now®: Our most important event of the year is the Walk to End Lupus Now®. Though we didn’t meet our goal, we did bring in over $42,000 in Cleveland and over $18,000 in Columbus! With these funds, we will be able to continue holding support groups, educating patients, and providing the great work of our patient navigators. In addition, a portion of the proceeds go directly to fund vital lupus research. Both Walk days were beautiful, with clear skies and happy faces. We want to thank all of the walkers, volunteers, and sponsors for coming out and supporting lupus awareness! A huge congratulations to our top fundraisers this year: Terri Krieder, Stephen Perhach, Lisa Bordner, Kelly Perhach, Tiffany Thiede, Marybell Moyet, Leslie Tierney, Shawntee Johnson, Latasha Adams, Hannah Powell, Nicole Corley, Laura Biernacki, Shelby Seibert, Ariel Shelton, Tanya Quinones-Santiago, and Rosie Chapman. We could not do what we do without all of your support. Thank you!
Support Groups
We have 10 ongoing support groups throughout the year across Ohio. As a way to discuss lupus and the side effects that come from it, patients are able to use this space as a way to connect with other lupians. Our support groups are a safe place for lupus warriors and their caregivers to learn, receive support, and connect with others. Join us anytime. Check out our support groups at https://lupusgreaterohio.org/ find-resources/find-support/.
New Patient Education Program
With the help of our lead patient navigator, Rita Piccin, BS, ND, RN, we educated new patients and their caregivers about lupus during our monthly new patient education program. This class is a “lupus 101” that covers the basic information about managing the disease and living well. For more information, call 1 (888) NO-LUPUS.
Educational Programs
Our lupus summits are the cornerstone of education here at the foundation. This past year, we held three major lupus education events. The first was the “Scaling the Lupus Summit”, which kicked off Lupus Awareness Month. The event, held at the Cleveland Clinic Administrative Campus on May 4, 2024, featured a panel of Cleveland Clinic physicians and had an audience of 39 virtual and 47 in-person attendees.
Our next education event was an entirely new format for us. Patients asked for the ability to have an open Q&A session with lupus specialists. We responded by holding our first ever lupus Town Hall appropriately titled, “What’s Up Doc?”. Our panel consisted of lupus experts from MetroHealth Hospital in Cleveland and was held on Saturday, September 7th, 2024 at the Rammelkamp Center on the MetroHealth Campus in Cleveland. We had 40 attendees from across the state attend.
Finally, we held our first in-person event since 2019, “Feed Your Mind”, in Cincinnati on Saturday, November 9th at Gratitude by Hilton. The event was a brunch and learn for patients and caregivers and featured University of Cincinnati Rheumatologist and Adjunct Professor, Nabeela Siddiqi, MD. It was special to see so many people come together in Southern Ohio and have open conversations about how lupus affects all of our lives.
Lupus Minority Wellness Event
In partnership with University Hospitals Cutler Center for Men, we kicked off Minority Health Month with “Passport to Health, A Route to Managing Your Wellness” on Saturday, April 6, 2024, at UH Drusinsky Sports Medicine Institute in Beachwood, Ohio. This event featured multiple wellness stations, on-site health screenings including urine protein to scan for lupus nephritis, lupus specialist guest speakers, strategies for managing wellness including tips on nutrition, exercise, and mental health. The day ended with raffle prizes and special guest Philly Weeden leading a Charg’d Up session with modified exercises for lupus patients. It was an incredible day filled with lupus awareness, camaraderie, and over 200 attendees! health professionals that help fellow lupus patients like her to understand their disease better. Patients appear on the podcast frequently to exchange stories with Suzanne. Some of our recent podcast topics include: Medicare Changes in 2025, benefits of a trust, and many patient stories. If you’re ever interested in appearing in a podcast episode, contact Alex: alex@lupusgreateroh.org or 1 (888) NO-LUPUS.
Combing Through Lupus
Our next Minority Health Month event was held on Saturday, April 13, 2024, and featured multiple salons across Ohio: Hairport Harbor in Cincinnati, Salon Patte in Wickliffe, Beauty Marks Salon in Cleveland, CrysStyles Hair Salon in Toledo, and Studio 32Nine in Toledo. Overall there were 88 attendees who gained more insight into lupus and learned about the potential signs and symptoms of the disease.
Golf Outing: On June 3rd, we held our annual Applied Underwriters Invitational Golf Outing. It was a fantastic day filled with great weather, golf, and a whole lot of fun! With help, we were able to raise over $47,600! We’d like to thank all of our committee members and sponsors who helped to make this event a success.
Living with Lupus Magazine: We designed, wrote, and published a total of four issues of Living with Lupus magazine. In the issues, we gave updates on lupus research, patients shared their lupus journeys, physicians gave much needed insight, and we gave tips to help live life better with lupus. Our magazines take an incredible amount of work and are a fan favorite! All of our constituents have access to our digital magazine, and hard copies are available for our members. If you are interested in sharing your lupus story, or becoming a member of the Lupus Foundation of America, Greater Ohio Chapter, please contact Alex: alex@lupusgreateroh.org or 1 (888) NO-LUPUS.
Healthcare Worker Lupus Training Program
As part of our continuous commitment to raise awareness and provide education about lupus to healthcare professionals, we offered a free lupus training webinar to healthcare professionals throughout the state. We partnered with MetroHealth’s Office of Professional Affairs to provide 2.0 CME credits to 37 health- care professionals who attended the webinar and completed a posttest and evaluation.
Could You Have Lupus? Self-Assessment Quiz
This online lupus self-assessment quiz is our initiative to raise awareness about lupus symptoms and help with our mission to reduce time to diagnosis. The quiz lists 15 common lupus signs and symptoms. If someone answers “yes” to four or more questions, we encourage them to bring their quiz results to their physician to talk about their symptoms and their possible risk for developing lupus. We are happy to report that 1,442 individuals took the self-assessment.
Patient Navigators (PN): Our ten patient navigators in Ohio work tirelessly to make sure that each lupus patient has a person they can call when they need assistance. This year alone, our patient navigators had contact with 1,876 individual patients, caregivers, and healthcare professionals with a total of 10,011 touchpoints. Our PNs are a vital part of our success story and help to ensure that the 66,000 patients living with lupus in Ohio have the resources they need.
Patient Assistance Programs
Our patient assistance programs in Ohio are critical to providing help for Ohio lupus patients who have barriers to care. This past year we have provided 83 patients with food assistance, 12 patients with healthcare transportation assistance, 28 patients with out of pocket healthcare expenses, and 13 referrals to Signature Health for mental health counseling.
Lupus Awareness Month (LAM)
LAM is always an exciting time at the Chapter. We held our kickoff month summit with the Cleveland Clinic, “Scaling the Lupus Summit”. We placed billboards throughout the state to shine a light on lupus and asked, “Someone You Know Has Lupus, Could it Be You?” We lit Terminal Tower purple in Cleveland for lupus awareness. We worked with area companies to produce statewide YouTube and Spectrum lupus awareness campaigns. And the most exciting thing we did for LAM was join fellow advocates at National in Washington DC to storm Capitol Hill, meet with legislators, and raise critical funds and awareness for lupus. Suzanne, our CEO, was joined by Nikki Roberts, Rosie Chapman, Ariel Shelton, and many other patients and caregivers from Ohio. Collectively, the LFA had over 300 advocates attend in person and many more participated virtually.
Special Shout Out
We’d like to thank Aurinia Pharmaceuticals for their ongoing support of our many educational and support programs. From sponsorship of the Walk to End Lupus Now®, to their support of our many summits, and our patient navigator program, we truly appreciate their ongoing efforts to raise lupus nephritis awareness. In addition, we’d like to thank the Ohio Commission on Minority Health, the Ohio Department of Health, GSK, and AstraZeneca for their ongoing support and commitment to finding a cause and a cure for lupus.
It takes an army to do what we do and continue our mission of improving the quality of life for all people affected by lupus through programs of research, education, support, and advocacy. Each of you plays a role in executing our mission. We value all of you, and each phone call, each moment you share with us on your lupus journey, means the world. Thank you for being a part of the success of the Lupus Foundation of America, Greater Ohio Chapter.