5 minute read
Walk to End Lupus Now
by Victoria Hornikel
When I joined the Lupus Foundation of America, Greater Ohio Chapter’s Cleveland Walk to End Lupus Now® in 2018, I witnessed people come together in support of the LFA, GOC. Every walk event gathers members of the lupus community who are united by the mission to improve the quality of life for all those impacted by lupus. Once I joined the LFA, GOC staff, the wonderful leaders of the organization taught me all about Systemic Lupus Erythematosus (SLE) and I learned how lupus, in its various forms, is so much more prevalent than I had realized. I began to see the importance of the services offered to patients and their loved ones, and I eagerly absorbed all the information that I could regarding the LFA’s comprehensive programs of research, education, and advocacy.
The Walk - 2019
As a part of “Team Lupus,” I embraced the role of walk coordinator. Under the guidance of the VP of Operations, Leslie Tierney, I had the honor of facilitating the 2019 Walk to End Lupus Now® events in Cincinnati, Cleveland, and Columbus. I was recently looking back at the results from these campaigns and was once again deeply moved by the impressive number of attendees and the inspiring 1,000+ Walk Warriors that participated in peerto-peer fundraising. It was such a privilege to work with the contributors throughout these campaigns, encouraging the incredible individuals who cumulatively raised nearly $115,000.
The Pandemic
The LFA, GOC relies on the generosity of individuals like you to further our mission. Our existence isn’t possible without you! When the COVID-19 pandemic struck, fundraising was forced to go virtual; and nonprofit organizations saw a huge loss in funding. We deeply appreciate the many donors who participated in the 2020 and 2021 walks. We also want to give a shout-out to those who contributed in nonfinancial ways to help to preserve camaraderie while maintaining a safe distance. The Walk Warriors who fundraised during this time demonstrated an ongoing commitment to eradicating lupus. We know that the pandemic has been especially difficult for so many, but you have helped to keep our momentum going, and we couldn’t be more thankful. Our lupus community has remained dedicated to the mission, and we will not lose sight of our vision - a world without lupus.
The Walk - 2022
In 2022, the Walk to End Lupus Now® became a hybrid event. In addition to those who attended virtually, approximately 300 people came out to the in-person event in Cleveland. The comparison of this small, but successful event with the accumulated data from the three pre-COVID walk events in 2019 turned up some fascinating results. While we anticipated a large decline in registration and total participation, it was the numbers that had actually increased from 2019 to 2022 that really stood out to me. It is with immeasurable gratitude that I would like to acknowledge the hard work done by the 168 individuals (over 80 percent decrease from the 1,021 fundraisers) who actively fundraised in 2022.
Every year, the fundraisers strive to accomplish their goals, and we are immensely appreciative of their achievements. But in 2022, the outstanding effort was obvious. The average amount raised by each individual in 2022 was $208.50, up nearly 150% from $83.50 in 2019. Results like this are almost unbelievable. The power shown by the lupus community is consistently impressive! Ohio’s Lupus Walk Warriors have continuously helped rally public support, understanding, and compassion for those living with lupus. Thanks to you, the LFA has supported over 450 groundbreaking research studies at top medical institutions. In the past 5 years alone, supporters nationwide have stimulated over $687.5 million in federal funding for lupus research!
The Research
The Lupus Foundation of America’s research is anchored in what matters: TRANSFORMING LIVES. The LFA’s patient-first research approach delivers better results to improve quality of life. We are the only organization that tackles lupus from every direction, challenging what isn’t working and funding and supporting research that is most hopeful to identify the causes of lupus, understand its progression, accelerate the development of new treatments, and ultimately find the means to prevent and cure this life-threatening disease. The pace of lupus research must continue to accelerate! Only with an expanded research effort will there be gains in understanding the disease, developing targeted therapies, and identifying individuals at risk of developing lupus, particularly those groups at risk of poorer outcomes. This is not a task for one individual, one family, one research group, one pharmaceutical company, or one single funding agency. Only through a comprehensive approach and by working together can we, the stakeholders, create and drive meaningful advances in understanding and treatment of this often-debilitating disease. The public must be involved to promote awareness about lupus. Your awareness-raising efforts and research investments drive breakthrough medical advances - so those suffering stop waiting and start living the lives they want.
The Lupus Foundation of America, Greater Ohio Chapter Walk Planning Committee
There is one word that comes to mind to describe the combined strength of our Ohio lupus community. That word is resilience. We have come together in our darkest hours to overcome and persevere in the fight against lupus. Let us all be reminded of our power, our community, and our continued commitment to fight against lupus. Thank you for being an important part of the lupus community. Together, we will make a brighter future for all people impacted by lupus.
