PATIENT NAVIGATOR CORNER SEPTEMBER 2023

As you know, the patient navigators (PNs) of the Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) serve a vital role within the organization. PNs are pivotal in ensuring lupus patients, caregivers, families, friends, and healthcare providers across Ohio have access to appropriate services, education, support, and resources. All of our PNs provide dedicated, empathetic service to the lupus community. In this issue, we’d like to spotlight four patient navigators whose light has shined bright for the chapter and for lupus warriors and their families throughout the state.

Meet Brenda Angle

Brenda is a patient navigator, calling lupus warriors in Northeast Ohio several times a year (aka wellness calls) to check in and to provide education, information and support. She is also a seasoned, empathetic facilitator of the Ashtabula Support Group, which meets three times a year.

Brenda was diagnosed with lupus at the age of 30 and has had many health challenges over the years. She has been with the Greater

Ohio Chapter for over 25 years, providing superhero wisdom to all and helping lupus warriors with her positive, can-do attitude. As Brenda says, “I believe it is essential to maintain an exceptional attitude about my (your) life and circumstances occurring in my (your) life. My mission is to teach and help others know that they can live with a chronic illness. Motivation is the key! ‘I think I can, I KNOW I CAN, therefore I do’!” Brenda also says, “It is a great pleasure working with the entire dedicated LFA, GOC Staff. I have known our fearless, super leader, Suzanne, for over 30 years.”

She worked as a Systems Analyst for 48 years and states that she could not have accomplished this without learning to ‘Be’ with lupus. Brenda loves the arts and has worked at a dance studio, taught dance, and performed. She enjoys combining her love for dance and her love and dedication for lupus warriors whenever she can. On August 12, 2023, Brenda hosted a table at the “Be Part of The Art Festival” at the Ashtabula Arts Center. She provided fun activities and information on dance, lupus, and the LFA, GOC. She also raised funds for the chapter at this event. Brenda plans on teaching dance again at the Ashtabula Arts Center.

Meet Allison Fedon

Allison is a PN in the Southwest Ohio region, a facilitator for the bi-monthly Northern Cincinnati Support Group, a wife to her husband John, a mother of two darling girls, Lucy (7) and Sutton (3). . . and she has lupus. In other words, she is a wonder woman lupus warrior! project, which helps spread lupus awareness during the month of May. She also represented the LFA, GOC and provided lupus awareness, education, and information at two health fairs: the My Pets Vet Adoption Day Fundraiser in Mason, Ohio on May 20, 2023 and the Community Health Fair & Family Day in Washington Court House, Ohio on June 10, 2023.

Allison was first diagnosed with lupus 10 years ago. She has been with the LFA, GOC since August, 2020. In addition to providing an empathetic ear, helpful information, and caring support as a PN and facilitator, Allison has recently worked on the Community Agency Partnership project. This project involved contacting service agencies throughout the state to ask them to join the LFA, GOC as a partner. Community partners receive information about lupus and the LFA, GOC, which they share with their constituents. The partner agencies’ websites are listed on our Patient Toolkit Resources webpage, so that lupus warriors can contact these partner agencies for needed assistance.

Allison says, “As a lupus patient, working with the LFA, GOC has given me a positive outlet. Connecting other lupus patients to resources, listening to their concerns, and getting to know them has been so wonderful. Some days, my disease doesn’t allow me to do everything I would like, but supporting other patients is something I can always do. I look forward to reaching more constituents in SW Ohio!”

Allison enjoys singing, baking, crafting, hiking, and traveling with her family. She is active in her church, participating in music and women’s ministry.

Meet Aaron Meller

Aaron is a physical therapist assistant by day and a super PN by night (well, really evenings). He joined the LFA, GOC in October, 2022 and is a PN for the Northwest Ohio region. Aaron already knew quite a bit about lupus when he first started. He has experience providing physical therapy to many lupus patients and, tragically, has lost a good friend who had lupus.

Aaron has quickly embraced the PN role. He has made many wellness calls to lupus warriors, providing much needed education and information on resources. He has worked on the Community Agency Partnership project. Aaron also helped to spread lupus awareness on the Lupus Awareness Month Proclamation project, successfully obtaining proclamations announcing “May as Lupus Awareness Month” from several cities in Northwest Ohio. Aaron also participated as a vendor at the 12th Annual Business & Health EXPO in Toledo, Ohio on April 29, 2023, increasing lupus awareness and providing lupus education and information about the LFA, GOC.

Aaron says, “I enjoy playing a small role in an organization doing big things. I believe that every day we get one step closer to solving the cruel mystery of lupus.”

Aaron is married, and he and his wife Sarah have two darling little girls, Amelia and Savannah. He enjoys traveling with his girls and seeing the world through their eyes. Aaron plans on beginning nursing school this fall.

Meet Mike & Patti Vollmar

Mike & Patti are the LFA, GOC’s husband and wife dynamic duo! Mike is a super dedicated PN in the Western Ohio region and facilitator of the Lima Support Group which meets on the second Monday of each month. He just opened a second support group in Bowling Green which had its first meeting on July 24 and meets on the fourth Monday every month. Patti is Mike’s co-facilitator and provides assistance wherever and whenever needed. Mike has made many wellness calls to lupus warriors, providing caring support and education. He has recently worked on the Community Agency Partnership Project and the Lupus Awareness Month Proclamation Project. Both Mike and Patti represented the LFA, GOC at the Grand Lake Health System JTDMH Family

Health Fair in Celina, Ohio on April 1, 2023.

Mike first became involved with the lupus community as a project coordinator for lupus programming. Both Mike and Patti joined the LFA, GOC team in 2013. About his experience with lupus warriors, Mike says, “My lifelong career as a social worker and chemical dependency counselor found a comradeship in the grace and perseverance I witnessed from those I met.” About his experience in the LFA, GOC, Mike says, “I am so excited to be a part of this wonderful, grass-roots venture. If you live in this area or know of anyone being affected by Lupus in Northwest Ohio, I would love to meet you!” the year, you can register online at lupusgreaterohio.org/walktoendlupus/.

Mike currently works at the Lima Public Library. Patti is at home fulltime. Despite being somewhat limited with pulmonary hypertension, she has enough energy to keep up with their two grandchildren, ages 5 and 6, when their parents are working. Mike and Patti plan on attending the Cleveland Walk this year.

As you can see, all PNs are ready and willing to provide education, resources, and support to lupus warriors and caregivers. If you would like to connect with any of our stellar PNs throughout Ohio, please contact the office at 1 (888) NO-LUPUS, (440) 717-0183, or info@lupusgreaterohio.org.

The 2023 Cleveland Walk to End Lupus Now® is fast approaching! The Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) welcomes everyone to join in on our largest event of the year! The walk will be held on Saturday, September 30, 2023 at 9am. We are lucky to be hosted by Margaritaville in the Flats East Bank (1150 Front Ave, Cleveland, Ohio 44113), and virtual participants can join through our online platform.

To those who participated in our Columbus Walk to End Lupus Now® on August 26, 2023 at COSI, thank you for your continued support! We greatly appreciate the donors and volunteers who registered and came out to walk with us. The event helped further our cause with the Lupus Foundation of America, Greater Ohio Chapter, and we couldn’t be more grateful for your contributions to end the fight against lupus.

For our Cleveland supporters, you will receive an official Walk to End Lupus Now® t-shirt when you register online today! You can also form a team and fundraise for some amazing additional prizes, including a course marker sign for raising $200.00! If you are interested in volunteering or joining us for our biggest fundraiser of walk to raise awareness of lupus and rally public support for those suffering from it. When you take part in the 2023 Cleveland Walk to End Lupus Now®, your contributions strengthen the patient services and programs our organization offers to lupus patients across Ohio.

The Walk To End Lupus Now® is a nationwide movement stimulating continuous steps toward the organization’s shared vision of a world without lupus. These events are held throughout the country and are meant to empower individuals to make an impact as fundraisers. Our fundraisers, or “walk warriors,” directly contribute to research devoted to finding the cure to lupus, while also helping fund local patient programs of support, education, and advocacy for Ohio.

Where do you come in? We need you to become a walk warrior and start your fundraising campaign to support the LFA, GOC! After you fundraise, join us, lupus patients, and other supporters at Margaritaville where we will celebrate the results of everyone’s combined fundraising efforts. The celebration will be followed by a noncompetitive, group walk along the sidewalks in downtown Cleveland. We

We are excited about our newest walk venue, Margaritaville in the Flats East Bank. The LFA, GOC has had great experiences with this location. In December of 2018 and 2019, Margaritaville took part in Cleveland’s 12 Bars of Charity fundraising events. Our organization has also enjoyed previous Cleveland walk routes through the east bank of the Flats and enjoyed walking along the river. Join us on Saturday, September 30, 2023, for the Walk to End Lupus Now® as we return to the Flats and Margaritaville! We will have entertainment and activity booths to visit, along with our program presenting our top fundraisers. We will have two route options, providing different levels of difficulty:

• The 2.5K is the full route

• There will also be a 0.25 mile “Butterfly Walk” (Designed for participants with limited mobility)

An estimated 60,000 Ohioans are living with lupus, an autoimmune disease in which healthy tissue becomes a target. This immune reaction generally involves inflammation that, over time, can cause significant damage anywhere in the body. Lupus is a chronic, often lifelong condition with no cure. Thanks to the funds raised by our incredible walk warriors, the Lupus Foundation of America (LFA) has contributed to every major breakthrough in lupus research since 1977. The LFA is the only national force devoted to solving the cruel mystery of lupus, and it has supported over 450 groundbreaking research studies at top medical institutions. While scientists work to find a cure, the Greater Ohio Chapter of the LFA provides comprehensive patient resources. The LFA envisions a world without lupus, and until that vision is realized, the LFA, GOC is dedicated to providing support to the people living with its brutal impact.

The Walk to End Lupus Now® encourages participants to raise money in support of the work done by the LFA, GOC. In the past 5 years, there have been 9 Walk to End Lupus Now® events in Ohio. These incredible fundraising events have raised over $400,000!

The 2023 Cleveland Walk to End Lupus Now® attendees will experience firsthand the strength behind our combined efforts to end lupus. Register now, create your walk page, set your individual fundraising goal, and begin soliciting donations from your network of supporters. Our chapter has continued the fight to find a cause and a cure for lupus even through the difficulties of the pandemic. The challenges have been many, but in the past several years our chapter has continued the good work by:

• Launching a new, patient-centered website with a comprehensive digital toolkit for lupus patients, caregivers, and healthcare providers.

• Distributing a lupus toolkit to over 5,000 healthcare providers in Ohio.

• Developing over 75 community partnerships with state and healthcare agencies.

• Delivering educational programs and events to empower patients with knowledge.

• Educating over 460 healthcare professionals across Ohio on lupus, symptoms, and medication.

• Creating a quarterly publication, the Living with Lupus magazine, which includes patient success stories, updates on medications and research, helpful tools, tips, resources, and more.

• Hiring, training, and implementing twenty patient navigators to provide support services and serve those living with lupus as a valuable resource.