PATIENT NAVIGATOR CORNER MAY 2023

Happy Spring to all! The warmer weather and the return of flowers, green plants, and new life provides hope, renewal, and fresh new starts. This is true for the Patient Navigators (PNs) and their activities at the Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC).

As you know, patient navigators provide lupus awareness, education, support, and information about our chapter’s resources to lupus patients, caregivers, families, friends, healthcare providers, and the general public across Ohio. Since the start of the year, the PNs have been working on several projects to accomplish their mission. Many of these projects were actually ongoing initiatives that were placed “on pause” due to the pandemic. We now have the opportunity to slowly move forward with them again, including some in person activities and events.

Community Partnership Project

The Community Partnership Project’s goal is to create a comprehensive network for the promotion of resources to lupus patients across Ohio. Patient navigators reached out to diverse community agencies (health clinics, mental health services, housing resources, food resources, durable medical equipment resources, etc.). We let these agencies know about the education and resources our chapter provides, and we learned about the services these agencies offer.

Seventeen agencies agreed to become community partners with us. These agencies received written information about lupus and the LFA, GOC that they will share with their clients and coworkers. The agencies also will be receiving a monthly newsletter with up-todate lupus and chapter news. A link to each agency’s website is included on our Toolkit for Patients resource page, so that lupus patients can reach out to the agency directly.

Health Fairs

The LFA, GOC participated in two health fairs in April: The Grand Lake Health System Community Health Fair in Celina, Ohio and the 12th Annual Business & Health Expo in Toledo, Ohio. PNs were on hand to answer any questions about lupus and the LFA, GOC and to provide written educational information and resources.

We have been invited to participate at an educational and fundraising event hosted by My Pets Vet, 8717 Fields Ertel Road, Mason, Ohio on May 20, from 12 - 3:00 p.m.

If you are in the area, please stop by and say hello. Our local PN will be more than happy to answer questions and provide information. Interesting fact: dogs can develop lupus too.

Patient Check In Calls

During March and April, the PNs completed another round of calls. Patient Check In Calls or Wellness

Calls are our attempt to reach out to lupus warriors, to “check-in” and see how you are doing and to see if there is anything we can do for you. Check In Calls are a great way for lupus warriors to connect with us, so that you can ask questions about lupus and learn about the free resources and services that our chapter has to offer.

Lupus warriors may tell us that all is well, and we love to hear that you’re living the best you can with your lupus. Sometimes, you have many questions and requests; and we may need to do some research or refer you to other organizations. And, sometimes, listening and providing an empathetic ear is the best support we can provide. No matter the request, PNs are ready to do our best to provide whatever help we can.

City Proclamations for Lupus Awareness Month in May

Among the many awareness activities in May, PNs are contacting cities throughout the state, to shine a light on lupus and the LFA,GOC. The PNs request that the city consider issuing a proclamation declaring May as Lupus Awareness Month. By issuing a proclamation, a city participates in our nationwide campaign to raise awareness about lupus.

Last year, we received proclamations from Ashtabula, Canton, Cincinnati, Cleveland, Findlay, Lima, Mayfield Heights, Toledo, Wickliffe, Willowick, Willoughby Hills, and

Youngstown. We hope to spread awareness to other cities this year.

Biologic Therapies Summit 2023 at the Cleveland Clinic

This yearly summit is an educational event for healthcare professionals. It returns to in-person learning, bringing together world leaders in immune-based therapies and addressing cutting-edge topics in immunology and rheumatology on May 11-13, at the InterContinental Hotel and Conference Center in Cleveland. The LFA, GOC is endorsing this educational program, and we will have a booth at the conference. If you are attending this event, please stop by and say hello.

As you can see, we are busy reaching out to lupus warriors; providing education, assistance and support; and raising awareness about lupus in different ways. We love connecting with you! If you have any questions or requests, please email us at info@lupusgreaterohio. org or call us at 1(888) NO-LUPUS (888-665-8787).

The Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) is excited to announce the 2023 Cleveland Walk to End Lupus Now®! The LFA, GOC welcomes everyone to join the largest event of the year taking place on Saturday, September 30, 2023 at 9 AM. Participants can attend either in-person at Margaritaville in the Flats East Bank (1150 Front Ave, Cleveland, Ohio 44113) or virtually through our online platform.

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 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.

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 being able to walk 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 three route options, providing different levels of difficulty:

• The 5K is the “Full Route.”

• The shortened “Alternative Route” is 1 mile long.

• There will also be a 0.25-mile “Butterfly Stroll” (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.

Thank You to Our Generous Presenting and Branding Sponsors: