Living With Lupus - Issue 14

LIVING WITH LUPUS

Star Spotlight!

HOW I GET INVOLVED

DeVonna Glenn raised funds and brought lupus awareness to her community. How did she do it? / p. 09

WHAT WE DON’T DISCUSS AS LUPUS PATIENTS

Read Rosie Chapman’s story and how she expanded her WTELN team across the country! / p. 11

FINALLY OUT OF THE TUNNEL

Find out how Lauren Glause overcame her personal challenges with lupus and continues to shine! / p. 13

SKATE FOR LIFE

For over thirteen years, Sonya Callahan and the the Trend$ettas have promoted health awareness to the Ohio rollerskating community. / p. 15

STRIVE TO SHINE BRIGHT!

RESEARCH NEWS & UPDATES

Check out the latest news in medical research and our community. / p. 21

WALK TO END LUPUS NOW!

The Walk is coming in HOT! See what we have planned for Cleveland! / p. 06

www.lupusgreaterohio.org

Suzanne

Greetings, Summer is moving swiftly. I can hardly keep up; the days are flying by. Here at the chapter, everything keeps moving and changing faster than I dare admit. We continue to strive to create better programs and enhance services. This changing world we live in makes it more complicated to achieve our goals. We continue to try and return to our pre-COVID activities.

We have begun in-person programs and events. Please try to join in when programs are in your area. We do know that many of you prefer to remain mostly digital, but we are striving to please as many people as we can with some hybrid projects.

We are busy planning our Fall Summit at MetroHealth Medical Center in Cleveland. It is an in-person event, and we hope you can join us. Also, the walks are coming up fast. Our walk events are critical to the chapter and its mission. The funds raised allow us to have access to unrestricted revenue to enhance and expand the many programs we offer.

I am hopeful that you are using the resources we have for your lupus journey. Education and support will give you the power to have a better quality of life. I know this firsthand to be true.

Speaking of power, I want to share some pretty powerful people that have made a serious impact on the chapter this spring and summer. I call them our superstars. Every once in a while, we will get a message from someone who wants to make a difference in the world of lupus. These superstars have come to us with open arms and hearts to share their vision of how their superpowers can make a change in the world of lupus and have a direct impact on all we do.

It is important to remember that this organization began as a mostly volunteer organization. Through the years volunteerism started to decrease and the need for dependable staffing became urgent. Our superstars remind me of the good old days when we saw the same passion in our volunteers. It is great to see these individuals rise and do it all in the name of lupus. No one asked them. They saw a need, rose to the occasion, and made a difference. Their selflessness has given this chapter and the world of lupus a priceless gift.

I have included my version of Twelve Qualities of Superstars on the following page. As you read them, ask yourself if you have any superstar qualities. I’m betting you do. I believe there is a superstar in every lupus patient.

I hope you enjoy this issue of our magazine and that you enjoy the articles about our superstars with joy and appreciation. And to our superstars of yesterday, today, and tomorrow…thank you. The world is a brighter place because of you. Keep on shining.

With a loving heart,

Suzanne

Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter

TWELVE QUALITIES OF superstars...

1. Ambition. Superstars, first and foremost, are driven to succeed. They are keen and articulate and inspire confidence.

2. Assertiveness. Superstars have assertiveness without being overbearing. They are self-assured without being aggressive.

3. Attitude. Superstars see the best in situations and in people. They see obstacles as things to overcome, not a source of fear and paralysis.

4. Solid work ethic. Superstars know the value of sacrifice and are self-motivated, hard-working, and reliable.

5. Shared values. Superstars live around a core set of values that generally reflect ethics and integrity in their work.

6. Diverse outlook. Superstars do not view the world solely from their own perspectives. They try to see problems and the solutions to those problems from the perspectives of others. They have taken the time to learn about other cultures, traditions, and points of view.

7. Extremely valuable. Superstars are extremely valuable to an organization. Organizations cannot succeed without them. They add passion and unwavering support to the vision of the organization.

8. Generosity. Some superstars give financially but most importantly, they give their time and talent.

9. Integrity. Superstars know right from wrong and choose to do the right thing. It is an essential quality.

10. Leadership. Superstars are leaders in society. The greater a candidate’s leadership ability, the greater the positive impact he will have in an organization.

11. Research. Superstars have a goal in mind and have done their homework to get there.

12. Shortage. Superstars are rare!

CONTENTS

Pg. 1 - 2 Letter from Suzanne

Pg. 4-5 Patient Navigator Corner

Pg. 6-7 Walk to End Lupus Now®

Pg. 8 GSK

Pg. 9-10 Patient Story: DeVonna Glenn

Pg. 11-12 Patient Story: Rosie Chapman

Pg. 13-14 Patient Story: Lauren Glause

Pg. 15 - 17 Patient Story: Sonya Callahan

Pg. 18 Blog and Podcast

Pg. 19-20 Get Involved & Ways To Give

Pg. 21-22 Research and News

4-5 Patient Navigator Corner

917

Pg. 23 -25 The PLUMM Study by Dr. Hermine I. Brunner, MD, MSc, MBA

Pg. 26-27 Fundraising Corner

Pg. 28-29 Could You Have Lupus?

Pg. 30 Staff Page

28-29

Patient Stories Could You Have Lupus?

2325 The PLUMM

Study by Dr. Hermine I. Brunner, MD, MSc, MBA

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!

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.

The Patient Navigator program is funded in part by Aurinia Pharmaceuticals and an earmark from the State of Ohio and managed by the Ohio Department of Health.

Allison worked on the Lupus Awareness Month Proclamation

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 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!”

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 year, you can register online at lupusgreaterohio.org/walktoendlupus/.

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.

Thank You to Our Generous Presenting and Branding Sponsors:

The GSK Patient Engagement Liaison (PEL) Team

Community focused. Devoted to patients.

“Everyday is a new day to be ambitious for patients. Behind every educational effort, is an opportunity to improve the life of a patient, their family, and an entire community.”

– Sherrita Dorsey, RN, MSN, FNP US Specialty, Advocacy and Patient Engagement Lead

The GSK PLACE Hub includes English and Spanish tools and resources to help support patients like you:

• Webinars and podcasts with our PEL team, healthcare professionals, and other patients

• Sharing best practices on dealing with financial and insurance matters

• Information on shared decision-making and communicating with your healthcare team

• Videos, brochures, and resources designed with patients in mind

PATIENT STORY STAR SPOTIGHT

By DeVonna Glenn

Throughout the years, I have made many efforts in the fight to end lupus. I get involved by donating, fundraising, and attending events. I just recently

started attending a support group. At this stage in my life, it was finally time for me to get involved, to hear what other lupus warriors are currently go -

ing through, and to see what I am able to share and learn from others.

This illness cripples and takes so much energy from our souls. I am motivated to fight because I have lupus and my mother had lupus. My support system has always been crucial in my struggles. My mom has been fighting for me for many years. Since I was four years old, she fought for me and with me as I grew into a teenager and learned about my illness. My family and friends have also faithfully walked with me every year in honor of me and my mother, and have supported me and my efforts to raise funds.

At the age of 15, lupus and I went to war with one anoth-

she wore a fun wig from the cancer society. She entered her funds to fight lupus.

hopefully one day there will be a cure to end the suffering of lupus warriors everywhere.

“I may not see how I’m making a difference, but I know that what I share is helping someone.“

PATIENT STORY STAR SPOTIGHT

By Rosie Chapman

Like other lupus patients, my story is a turbulent one. After being brushed off by my doctors, I was finally diagnosed at the age of 23. My diagnosis took about a year and a half but I was quickly referred to a wonderful rheumatologist who managed my symptoms. I could tell you all about overlap conditions, treatments, and generally not being believed, but for lupus patients, these are common occurrences. I want to reflect on something else that has been just as big a part of my story and the reason why I have been successful within this organization that I’m so grateful for.

The thing many of us don’t often speak about is the mental health aspect of being chronically ill. No, I’m not talking about the things they try to diagnose you with when you have physical symptoms. I’m talking about the things that happen as a side effect of being chronically ill. My lupus

changed my life a lot. I had to adapt my life to be able to live with lupus. I had a husband and other relationships who couldn’t cope with the fact that I was chronically ill. I had “friends” who disappeared because they couldn’t, and didn’t want to try to understand why my life looked differently. Some of the ways I identified myself changed dramatically. Due to all of these factors on top of the physical pain and the toll of living with lupus caused me to be profoundly depressed for a few years. The type of depression where you don’t leave your bed, don’t speak, don’t smile, and it’s difficult to even shower or be functional at all. I found myself not managing my physical conditions, because I no longer cared if this disease just removed me from the world.

I had lost my light, my spark, my identity. I found myself at the bottom of a very dark hole with no tools and no idea or even

desire to try to get myself out. I lived this way for about three years.

Then something strange happened. I decided to download TikTok during the pandemic because, honestly, I had nothing else to do. I was too sick and too depressed to even leave my home or maintain any relationships. At this time I had no self-confidence, no friends, no desire to do anything, speak to anybody, or interact. I knew I’d never post or interact with others. Then one day, I accidentally clicked into a live stream and the people there were kind and talked to me. Here’s the really strange part: nobody expected anything from me but to just be myself. I started meeting people on the app and they encouraged me to start posting in my own time and in a way that I felt comfortable. I was able to do this from my bed, couch, or anywhere else my disease or mental health may have put me at the time. I found a community for me, a way to be useful when

I thought there wasn’t one, and I found a whole new life. Fast forward to almost three years later and the time this fundraiser is taking place. I’ve made hundreds, if not thousands, of videos, gained a small following, and met so many amazing people. I’ve done educational content about lupus, mental health, and honestly done a lot of silly things just to make people laugh. I found a place where I could just be me. I met the love of my life on Tiktok. Which, just to be clear, I don’t recommend - it usually doesn’t work out. More than anything, I found my light

again. All of my success with raising money for an amazing organization like the LFA was directly because of that silly, weird, annoying, amazing app. There will be people attending Columbus’s Walk To End Lupus Now® representing our team “Chronically Awesome” from NC, PA, Northern Ohio, and from the Columbus Area. We have team members from all the aforementioned states as well as Missouri and Texas. We’ve had donations from all over the country as well as England! All this as a direct result of being myself and telling my story on an app that saved my life.

Saying I’m grateful isn’t enough. The point of me telling you this long and kind of strange story is to let you know there is always hope and sometimes it comes from places you’d never expect. I never could’ve imagined I’d have the beautiful life I have now because of an app. I never could have believed I’d have created a small mental health network called the BBS, or Broken Brain Squad, who’ve become like a family of people who support each other from all over the country. None of these things would’ve been possible if I hadn’t just reached out and told my story. Although we all have to pay close attention to our physical health, don’t forget about your mental health. I’m beyond grateful in my darkest times that a bunch of strangers on the internet reached in and shone a light and helped me get out! Trust me when I say, as lost as I was, if I do it, I guarantee you can too!

“I found a community for me, a way to be useful when I thought there wasn’t one, and I found a whole new life.”

PATIENT STORY STAR SPOTIGHT

By Lauren Glause

Joint pain, swelling, migraines, weight gain, skin abrasions, depression, brain fog, fatigue, insomnia. I was debilitated. I had given birth to my daughter, Natalie, when I was 29 years old, and ever since then, I just didn’t feel well. At first, I dismissed my concerns as being a tired new mom, but some days, I couldn’t even get out of bed because the pain was too great. I knew this wasn’t “normal.” My unexplained symptoms took about two years to diagnose, and then, this life-changing lupus diagnosis was delivered by a receptionist who left me with more questions than answers. She offered to book a doctor’s appointment for me in four months, but that was unacceptable.

Luckily, I didn’t stop searching for information, and I eventually found a kind and patient doctor who spent time thoroughly explaining the disease process and my treatment options. I had 18 vials of labs drawn and was referred to neurology, psychology,

and hematology for a follow-up. This past December, I was diagnosed with antiphospholipid syndrome, a rare blood-clotting disorder. With this additional diagnosis, my three-year journey to have another child came to an end because of the risks and new medications. Initially, I grieved for the loss of the future children I thought I would have, but eventually, I found peace and gratitude for the family I have. I have chosen to focus on my daughter and the life that I’ve built with my husband, Matt. I feel good about this decision, and the new medications have definitely improved my quality of life. I still get migraines, but it’s a few times a month instead of nearly daily. In short, the good days outnumber the bad days, and I’m grateful for the team of compassionate and competent medical providers who’ve given me new tools to fight this disease. I encourage everyone to advocate for yourself to get the best medical care possible. You deserve it.

As a person who tries to find silver linings in life’s challenges, I truly believe that some good has come to me from my lupus diagnosis. The support and love that I’ve received from my family and friends has been immense. I’m grateful for all the joy and blessings in my life, including joining this organization, attending the meeting for the walk captains, and connecting with fellow lupus patients. Some of you may be wondering why it took me years after being diagnosed to do a Google search for the Lupus Foundation of America, Greater Ohio Chapter. Truthfully, it has probably taken me three years to wrap my head around all of this. There’s no denying that Lupus is a scary diagnosis. Thanks to my care team and my network of support, I have slowly dug myself out of a deep hole of depression, pain, fear, and denial. Meeting with others who share my disease has given me another community of support, and I don’t feel alone any longer.

The Lupus Foundation of America, Greater Ohio Chapter is an inspiring organization that assists thousands of people living with lupus; helping them thrive, not just survive. I am still new to this foundation, but I’m excited about attending the support groups, listening to the podcasts, reading the magazines, and participating in events. I also plan to tell my medical providers all about this foundation and its resources, with the hope that they will provide more referrals to this incredible organization for newly diagnosed lupus patients. It’s critical for us to have a place to turn to that is filled with people who understand our journey. I think we can help each other and connect and share our experiences in the ways humans were meant to do. After talking with fellow lupus patients, I feel inspired to share my story and hopefully help others, as well.

I am a mother, wife, daughter, sister, granddaughter, niece, cousin, friend, occupational therapist, and lupus warrior. I love people, random acts of kindness, cooking, serving others, chocolate, art, home decorating, nature, antiques, and thrifting. I do not have time to be in bed with pain every day; no one does. We are all unique and have different passions, but we come together as lupus warriors, striving for better outcomes and improved quality of life. The upcoming walk is a big fundraiser for this foundation, but it is so much more: we walk together in solidarity and community to raise each other up.

I walk to find a cure, to educate, to advocate, to be an active mom. I walk for you, my fellow lupus warriors. I walk for me and all the loves of my life. I am hopeful that one day there will be a cure for this disease that has caused me pain and infertility and robbed me of some abilities I used to take for granted. I sometimes wonder what would have happened if I had known about this organization when I was first diagnosed instead of three years later. Then again, I think it was

supposed to work out this way, so I could share my struggles to spare others from a similar fate. I spent much of those early years in a dark tunnel, but I’ve found my way to the other end where the sun is shining. I am hopeful, strong, empowered, and excited for the future. There is a place in the sun for those of us still in that dark tunnel. Find the help, interventions, and adaptations you need to move out of darkness and go to the brighter path forward. Let’s shine together.

PATIENT STORY STAR SPOTIGHT

Lupus Awareness in the Ohio Skate Communities

Sonya Callahan

About Skate For Life

For over thirteen years, Sonya Callahan and the Trend $etting Crew (T$C) - a.k.a. the Trend$ettas - voluntarily operates a grassroots health awareness movement in the Ohio roller skating communities called Skate For Life (SFL). In 2010, Sonya became acquainted with T$C when she was introduced to Bryant “Bee1ne” Anthony, T$C Founder and President, by their mutual friend and skater, Sky Mike. Each year, Sonya and T$C co-host the annual SFL benefit in April, which promotes various health and social justice issues.

Although SFL Coordinators

Sonya, T$C Bee1ne, and T$C Jame “Chilt” Chilton continue to be the core SFL representatives, over the years they have been strategically transitioning the SFL movement into a community-wide effort that encourages all skaters and skate groups in

Ohio and nearby areas to unify and collaborate for a worthy cause. This is visibly noted by their well-known hashtag “IAMSFL” (I Am Skate for Life). Prior to this, SFL was solely a collaboration between Sonya and T$C. Now, SFL is inclusive to everyone who wants to be involved, which strengthens and encourages positive vibes within Ohio skate communities.

Sonya believes that fate is what brought her and T$C together and refers to them as her brothers and sister in community service.

About Sonya

Sonya is a community outreach professional with over 17 years of experience. She has a Master of Education in Health Education and Promotion from Kent

Pictured above: Sonya and the Trend$ettas (standing left to right: Chilt, Jay, Stonie, KB, Ray, Courtney, Dez, Bee1ne, and Dave, with Dillon in green and Sonya and Ley Ley standing in the middle. Kneeling on the floor left to right are Tim and Torjay. Laying on the floor in front are Carter and Deshawn.

State University. For Sonya, SFL is her personal ministry outside church walls, where she enjoys fellowshipping and collaborating with her Ohio skate family to assist those in need. She is inspired by Hebrews 13:16, which states “And don’t forget to do good and to share with those in need, for these are the sacrifices that please God.” Moreover, Sonya’s favorite quote is from her shero, Wonder Woman, which states “Because no matter how small an act of kindness or generosity or simple positivity you put out into the world, it will make a difference.”

Ohio Skaters Affected by Lupus

• T$C Leylani “Ley Ley” Wilson proposed Lupus awareness and is the inspiration for SFL’s three-year campaign. Ley Ley’s mom, Lani Stafford, and T$C Bee1ne’s mom, Lavonia Murrell, are Lupus Warriors. Sonya wants to support Ley Ley and Bee1ne since they are affected by Lupus too.

• Sonya’s aunties are Lupus Warriors as well – one is currently living with lupus and her sister passed away from lupus complications. Also, Sonya worked with a volunteer when she was in organ procurement who had lupus. She saw the grueling effects of kidney dialysis on his body and the hopelessness he felt when doctors informed him that he could not be listed on the organ transplant waiting list for a kidney due to his lupus diagnosis. To this day, Sonya thinks about him from time to time and wonders about his quality of life.

• Cleveland skaters Eryca Bey and Laura Lewis are Lupus Warriors. On August 8, 2021, SFL organized a “Sisterhood Celebration and Lupus Awareness Fundraiser” at CLE Urban Winery in Cleveland Heights, Ohio. Eryca, Lani, and Laura shared their individual stories about living with Lupus which were very educational, heartwarming, and inspiring. Moreover, SFL raised $640, and all the proceeds were given to the Lupus Foundation of America, Greater

Ohio Chapter.

• Cincinnati skater, Travis Barnes, Founder and President of the Hoodsk8rs skate group is very familiar with lupus because his sister is a Lupus Warrior.

• Columbus skater, Lynn “Ci Ci” Anderson, Founder and President of the Tru Striders skate group has a sister affected by Lupus and said the following: “I support and fight for my sister. She has been fighting this battle for many, many years! She has lost friends to this disease as well! My sister is my biggest inspiration! She is stronger than anyone I know! I love her to the moon and back! I stand and fight for her and for all who battle this condition!”

The Effects of SFL’s Lupus Outreach in the Ohio Skate Communities

Dayton skater, Ashley Houston, lost her sister, Don’tasia Nevins, to lupus complications on January 30, 2023. She was only 24 years old. Since Don’tasia

(left to right) Laura Lewis, Eryca Bey, Sonya Callahan, Lani Stafford, and T$C Leylani Wilson at CLE Urban Winery in Cleveland Heights, Ohio.

Hoodsk8rTravis Barnes and Sonya Callahan

(left) Ashley Houston and (right) Don’tasia Nevins

was not involved in the skate community, SFL was not aware of her illness or passing until Ashley posted the following on Instagram the day after the lupus benefit: “One thing I love about Ohio Skate For Life and T$C is that they are always going to have something to skate for – this time it was LUPUS. This event was special to me because I recently lost my sister to lupus. I wear purple for her; I got to skate for her and those who are fighting this rare illness. Much love and appreciation to Bee1ne, Trend$ettas, and Skate For Life for giving me a reason, for I always look forward to these events.”

In 2023, $2,095 was raised for Lupus awareness and all pro -

ceeds were donated to the Lupus Foundation of America, Greater Ohio Chapter in memory of Don’tasia Nevins.

Changes or Outcomes Seen As A Result Of Our Efforts

From 2021 – 2023, SFL has raised approximately $5,610 for the Lupus Foundation of America, Greater Ohio Chapter. Most of the funds donated were generated from Sonya’s employer, Elevance Health, via the company’s “Dollars For Dollars” program – in which she receives 100% matching for signature charities, like the Lupus Foundation, as well as rewards for volunteer hours.

Overall, Sonya thinks SFL has made great strides in spreading

awareness in the Ohio skate communities. However, she believes there is still room for improvement. And although SFL is extremely pleased and appreciative that most Ohio skaters deem SFL as a positive movement that helps people who are in need, they find that getting skaters to donate is challenging.

Finally, thanks to personal stories shared and Sonya’s own experience with being affected by lupus, she will always be motivated to fight to end lupus and she looks forward to assisting the Lupus Foundation of America, Greater Ohio Chapter with their efforts.

“Because no matter how small an act of kindness or generosity or simple positivity you put out into the world, it will make a difference.”

LFA,GOC BLOG & PODCAST My Lupus Living Room

Episode 25 - Mi Sala de Estar Con Lupus en Espanol

On this episode of My Lupus Living Room, our board chair, Maria Rey Woyma, sits down with Gabriela Sison, MSN, BSN, RN of GSK. Both women are fluent in Spanish, so we took this opportunity to record this podcast that caters to our Spanish speaking audience.

Episode 26 - Bryan - Development Manager

On this episode of My Lupus Living Room, Suzanne sits down with our new Development Manager, Bryan Haynes. Bryan shares a little bit of his background and provides updates on some of our fundraising events coming up.

Lupus Night Light

Our blog, Lupus Night Light, is a place where we share stories, and practical advice from patients that they have learned along their lupus journeys. You will find stories of triumph, hardship, and everything in between. It is meant to be a cathartic journey for both the contributors and readers alike.

Email Sign-Up

Stay up-to-date on everything we’re doing by joining our mailing list. You will receive a monthly newsletter, support group reminders, Walk to End Lupus Now® updates, research news, and more. Sign up now: lupusgreaterohio.org/stay-informed

Text Message Notifications

Text “NOLUPUS” to 833-4490800, complete your contact information, and be sure to opt in to receive important lupus updates directly to your mobile device.

Get Social

Join us on our social media platforms to stay connected: lupusgreaterohio.org/stay-informed/ get-social

GET INVOLVED JOIN THE

Host a Third-Party Event

Do you have an idea to support the mission? Give us a call at the office to discuss and plan your own fundraising activity to benefit the LFA, GOC. Here are a few examples of virtual events that people have coordinated in the past: Pampered Chef Party, Online Auction, Charity Video Game Tournament.

If you are interested in hosting a third-party event, reach out to us for our official guidelines and an application.

a cohesive voice heard in Washington, D.C. that ensures the lupus agenda is at the forefront of the legislature. Last year’s National Lupus Advocacy Summit was held June 26 - 28 and featured a few of our amazing Ohio advocates. Thank you to those who participated!

Instagram.com/lupusgreaterOH

Facebook.com/lupusgreaterOH

Twitter.com/lupusgreaterOH

Become a Member

One-year: $25 Lifetime: $200 lupusgreaterohio.org/get-involved

Advocacy

Each year, the National Lupus Advocacy Summit brings together the lupus community to pursue a collective vision of a world without lupus. In addition, we help to ensure there is

We invite you to register to be a lupus advocate in Ohio. Our current initiative is to keep lupus in the state budget for the new biennium. Much of the educational and support programming produced by the LFA, GOC over the past two years has been a direct result of the funding provided by the state of Ohio and the Ohio Department of Health. It is imperative that we let Ohio’s leadership know the importance of keeping lupus in the public health agenda. lupusgreaterohio.org/ get-involved/advocate

WAYS TO GIVE

Traditional

• Checks

Please make checks payable to the Lupus Foundation of America, Greater Ohio Chapter, and mail them directly to:

12930 Chippewa Road, Brecksville, Ohio 44141.

• Credit Card + PayPal

Fill out the online donation form or call the office.

• Facebook Fundraisers

• Instagram Stories

In Honor of

• Memorial Donation

• Tribute Donation

Through Your Job

• Employer Matching Gift Program

Ask your employer if they match charitable contributions made by their employees.

• Combined Federal Campaign CFC #51890

Investing

• Stock or Other Securities

• Life Income Plans Pooled Income Fund

Charitable Remainder Trusts

• Creating Healthier Communities CHC #9963

• United Way Campaigns

Other

• Donatestuff.com

Schedule a donation pickup of your gently used goods and pick the LFA, GOC as your charity.

• Leave a Bequest

You can include the LFA, GOC in your will to support the mission beyond your lifetime.

• Give the Gift of Life Insurance

Name the LFA, GOC as a sole or partial beneficiary.

For more information on ways to give, please visit: lupusgreaterohio.org/get-involved/ donate or call our office at 1 (888) NO-LUPUS.

$1,000 FUNDS EDUCATIONAL SUMMITS FOR OHIO

$500 SUPPORTS 8 NEW PATIENT EDUCATION CLASSES

EQUIPS LFA,GOC PATIENT NAVIGATORS WITH TRAINING $250

PROVIDES FINANCIAL AID FOR MEDICATION CO-PAYS $100

HELPS A LUPUS PATIENT WITH TRANSPORTATION $45

SENDS AN INFORMATIONAL PACKET $5

LIVING WITH LUPUS MAGAZINE

RESEARCH NEWS & Updates

New Study Identifies Certain Gut Bacteria as Potential Drivers of Lupus Flares

In a recent study, researchers investigated the relationship between gut microbiome and lupus disease activity over time. They found that growth of a particular gut bacteria, ruminococcus blautia gnavus (RG), may contribute to lupus flares.

Over a four-year period, researchers observed 16 women with lupus, and 22 women without lupus –who served as the control group. Compared to the control group, study participants with lupus were more likely to experience an increase

in harmful gut bacteria, especially during disease flares. RG bacteria was detected in 40% of study participants with lupus nephritis (LN, lupus-related kidney disease), and increased during flares.

Researchers have identified a common characteristic of the RG strains that helps the bacteria adapt and multiply during flares. The most notable characteristic of these strains was the presence of a new type of lipoglycan on their cell membranes. These lipoglycans had consist-

ent structures and triggered a strong immune response in the form of antibodies.

While more research is needed to fully understand the relationship between lupus and the gut microbiome, these findings will help identify biomarkers and guide future studies. Learn more about lupus flares.

lupus.org/resources/what-is-aflare

Administration of New Oral Treatment for Lupus

A new investigational therapy for lupus called ESK-001 has entered Phase 2B study and researchers are administering the oral drug to study participants. ESK-001 inhibits or blocks the tyrosine kinase 2 or TYK2 enzyme, preventing it from

triggering inflammation. TYK2 is a critical driver of disease in lupus. In the LUMUS trial, 388 people living with moderate to severe active lupus who test positive for autoantibodies will be administered the therapy or a placebo for 48 weeks. The

group’s overall disease activity will be assessed post-study to determine if the drug reduces flare activity. Continue to follow the Lupus Foundation of America for updates on ESK-001 as well as other lupus clinical trials.

PLUMM STUDY

Dr. Hermine I. Brunner, MD, MSc, MBA

PEDIATRIC STUDY PARTICIPANTS NEEDED

Cincinnati Children’s Hospital is currently recruiting for multiple lupus studies. As an autoimmune disease, lupus can affect many different body systems due to a patient’s immune system having trouble telling the difference between healthy tissue and foreign substances. Two exciting studies focusing on different systems are highlighted below, one for lupus nephritis and another for lupus with brain involvement.

The Pediatric Lupus Nephritis Mycophenolate Mofetil (PLUMM) Study focuses on lupus nephritis, when lupus affects the kidneys. Standard treatment for most persons newly diagnosed with lupus nephritis (LN) includes steroid plus

oral mycophenolate mofetil (MMF). The safety and usefulness of MMF for the treatment of LN has been evaluated in adults and some children. When taken orally, MMF is quickly broken down in the body to mycophenolic acid (MPA). MPA helps to calm the immune system and decrease the inflammation of the kidneys. More MPA in a patient’s system is associated with better immune response and less inflammation. However, each patient processes MPA differently in the body, and this is thought to be one of the reasons that MMF does not work as well for LN in some people. Other reasons include differences in the amounts of certain blood proteins, lowered kidney function, and changes in liver

function. Studies in adults with LN have shown people with LN have a 36% better response with MMF if the medication is dosed based on the amount of MPA in the blood rather than the standard dosing method based on a patient’s height and weight.1,2

1 GMN Daleboudt Lupus 2012; W Kittanamongkolchai, Kidney International 2013 2 Sagcal et al: Semin Arthritis Rheum 2011; 20140:307-313.

Funded by the National Institutes of Health, Drs. Hermine

Brunner and Prasad Devarajan from Cincinnati Children’s Hospital Medical Center are conducting a clinical trial to look at two different methods for dosing MMF. The study would like to learn if one way is better at reaching the best possible levels of the drug MMF in the body. In this clinical trial, participants will be randomly assigned to one of the two treatment strategies (standard MMF dosed by body-weight or personalized dosing of MMF based on a patient’s MPA levels). The study is blinded so that the doctors and participants will not know which patients are in which groups. The study goal is to determine whether doctors should use personalized-dosing strategies for MMF use in children with LN going forward to achieve better outcomes for children with LN.

The study will be conducted at twenty children’s hospitals across the United States. Newly diagnosed lupus nephritis patients between the ages of 8 and less than 17 years old who are being treated with MMF for their lupus nephritis are eligible. Study participants will be part of the study for 11 visits over the course of one year, during which they will receive MMF free of charge. Participation will include: blood samples collected by fingersticks (to test

MPA levels), collection of medical information, monitoring of patients’ study drug usage and side effects, and completion of questionnaires about patient wellbeing. Participants must have a smart phone to join the study as messages will be sent to remind them to take their MMF daily.

The study is expected to last five years with 105 participants total across twenty sites. The duration of study may be extended, and additional sites may be added depending on the rate of enrollment. If you would like more information, please email plumm@cchmc. org. Patients are reimbursed for their time and effort.

The Vascular Pathophysiology in CNS SLE: The Blood-CSF Barrier study aims to learn more about how lupus affects the brain. Often, organ damage from lupus results from breakdown of blood vessels. And in the brain, blood vessels have special barriers between the blood and brain tissue. The best-known barrier is made up of specialized cells that are tightly connected at the surface of small blood vessels that control how substances can go between the blood and the brain tissue. This is called the blood-brain-barrier (BBB). The BBB is a special tissue layer around the brain protecting it from infections or diseases in other parts of the body. Using

brain imaging, researchers have shown that the BBB is leakier

in lupus patients compared to healthy persons. Experiments in mice suggest that substances that should stay in the blood can enter the brain, even when the BBB appears to be working properly. These experiments suggest that there might be another way for materials in the blood to leak into the brain. The brain includes fluid, called cerebrospinal fluid, or CSF. CSF surrounds the surface of the brain and fills spaces near the center of the brain called ventricles. It has several functions in the brain, most notably acting as a cushion for brain tissue. Inside the ventricles is a structure floating in the CSF called the choroid plexus that has a large amount of blood vessels. These blood vessels don’t have a BBB and are naturally leaky but they are encased in the choroid plexus by a specialized layer of cells that substances in the blood must pass through to get into the CSF. This is known as the blood-CSF-barrier. Once

blood contents enter the CSF in the ventricles through this layer, they can easily enter brain tissue that surrounds the ventricles. So, if there is breakdown of the blood-CSF-barrier, harmful substances from the blood can make their way into the brain tissue surrounding the ventricles.

In multiple sclerosis, which is another disease that affects the brain, some imaging shows that there is damage mainly to the brain tissue that surrounds ventricles, and the damage is worst at the ventricle surface and decreases with distance from the ventricle. This study

wants to test the idea that lupus, like multiple sclerosis, can also affect the brain through a leaky blood-CSF-barrier. We will use MRI advanced imaging methods to measure blood flow and leakage into the CSF in the choroid plexus. We will also use imaging methods to measure a variety of tissue and blood vessel properties around ventricles in both patients with lupus and multiple sclerosis to examine the blood-CSF-barrier. If we find blood-CSF-barrier involvement for lupus, it could open new ways to study lupus in the brain and help development of new treatments.

This study is conducted only at Cincinnati Children’s Hospital with target participation of 20 people with active lupus, 20 people with multiple sclerosis, and 40 healthy controls in the age range of 12 to 25 years. There is one visit for this study lasting up to three hours. Each participant will undergo an MRI of their brain as part of the study, lasting about one hour. They will also complete a computer-based battery of cognitive tests, called PedANAM, lasting 30 to 40 minutes. Participants will be compensated $150.00 for their participation. For more information, please contact: Cat Robben (513) 6367299.

FUNDRAISING CORNER BY BRYAN HAYNES

Hello all, and welcome to the Fundraising Corner! I’m excited to share what the Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) has been up to regarding fundraising and events. This summer, we have been busy! Many of our chapter’s patients and their families have put on some amazing fundraisers which have helped create awareness and raise funds for the LFA, GOC.

The team at the LFA, GOC has been out in the community spreading awareness with events at the Akron RubberDucks, an ESPN event in the Flats in Cleveland, the Columbus Walk to End Lupus Now® , and the Applied Underwriters Golf Invitational. We are also gearing up for one of our biggest fundraising events of the year: the Walk to End Lupus Now® in Cleveland.

For those who came out to the Columbus Walk to End Lupus

Now® on August 26 and the Golf Invitational on August 21, we greatly appreciate your support. Thank you to all the support we have continually received from our volunteers and those who came to walk and golf with us. Your efforts mean so much to our organization, and we look forward to seeing your continued dedication in the fight to end lupus.

As we get ready for our 2023 Cleveland Walk to End Lupus Now® event at Margaritaville on September 30, I’d like to make one more request: if you haven’t signed up to be a walker or team captain, now is the time! We still need your help and support - every contribution goes a long way to assist our chapter in the fight to end lupus. If you are interested in volunteering or participating, please visit our website at:

www.lupusgreaterohio.org/ walktoendlupus

I’d like to take a moment to recognize the individual fundraisers put on by lupus patients and their family members. At least once per week, our birthday lupians and their friends and families hold Facebook fundraisers. We are so grateful to each person that raises funds for the LFA, GOC and recognizes our organization. Thank you!

I want to highlight a couple people who are hosting fundraisers for us. Sonya Callahan held the annual Skate for Life Event. She received matched donations through her employer and she raised over $5000 for the LFA, GOC. Way to go Sonya!

Another constituent I’d like to highlight is Terri Kreider. Terri has hosted several fundraisers in her town (and mine), Wadsworth, Ohio. She raised over $600 through a lemonade stand with different games and activities. She also hosted a painting workshop. There are so many

wonderful ways to raise money for the lupus cause, and Terri really got creative and went the extra mile. Thank you for raising funds for the Walk to End Lupus Now®, Terri!

I would also like to express gratitude to Lauren Glause. Lauren signed up to be a Cleveland Walk team captain and has really gone the extra mile in her fundraising efforts. At the time of publication, Lauren raised over $2,000 by reaching out to family and friends. This is absolutely incredible. Well done, Lauren!

Rosie Chapman is also a superstar! At the time of publication, she raised more than $3,000 for the Columbus Walk to End Lupus Now®. Not only has she reached out to her support system for aid in promoting the Walk, she has also created a Tik-

Tok page bringing in donations from all over the world. Incredible work, Rosie!

This year, we challenged all of our constituents in northeast Ohio to sign up for our Cleveland walk to gain entry into a drawing to throw out the first pitch at an Akron RubberDucks game. Tamie Trautman was our winner! She represented us well and threw the first pitch of the game, a strike right down the middle of the plate to start the game. She has also raised close to $200 for her walk fundraiser. We were so excited to have you represent us, Tamie. Thank you!

On the sports side, the LFA, GOC held a successful golf fundraiser at Mayfield Sand Ridge Club where over 100 golfers were able to play while raising money for our organization. Thank you to all who came to play and for all of your donations!

Last, I want to thank all of our amazing volunteers who have helped us get ready for our walks in Columbus and Cleveland. We are so grateful for the support of Abigail Rollins and her team of fellow students at Lake Erie College who have made thousands of phone calls to past walkers. I’d also like to thank Kelly Perhach, who has also made hundreds of calls to past walkers while hosting fundraisers both big and small. Our chapter couldn’t accomplish all that we have without our volunteers. I am so grateful for all the hard work put in by all.

Again, thank you to all for your incredible support. We are so grateful to our superstars who help this organization succeed and make a difference in the lives of lupus patients. We couldn’t do any of this without you.

Could You Have Lupus?

Brain and Nervous System

Have you had a seizure or convulsion?

Have you had unexplained confusion that lasted more than an hour?

Have you had unexplained fever higher than 100º F/38º C for more than a few days that was not due to infection?

Heart and Lungs

Eyes, Nose, and Mouth

Have you had sores in your mouth or nose that lasted more than five days?

Have you developed irritation or dryness in your eyes or mouth for more than a few weeks?

Stomach and Intestines

Have you had unexplained weight loss or abdominal pain or tenderness when your belly is touched?

Have you had a stroke or heart attack?

Have you felt chest pain while taking deep breaths? Kidneys

Have you been told you have protein in your urine?

Have you had swelling in your legs and ankles on both sides at the same time?

Blood and Circulatory System

Have you been told you have anemia, low white cell count, or low platelet count?

Have your fingers and/or toes become pale or red or blue, or felt numb or painful?

Have you had blood clotting problems or a miscarriage?

If you have had any symptoms like these, especially if you have had several, talk to your doctor about lupus. Early diagnosis and proper medical care are the best ways to manage lupus.

Muscles and Joints

Have you had stiff, tender, and swollen joints that feel worse in the morning?

Have you had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep?

Skin

Has your skin broken out after being in the sun, but it’s not a sunburn?

Have you had redness or rash across your nose and cheeks in the shape of a butterfly?

Have you had sores on your skin that would not heal?

Have you had sudden, unexplained hair loss?

Lupus is a chronic autoimmune disease that causes inflammation in various parts of the body. The disease can r a nge from mild to li f e - threatening. Ninety percent of those d i a g n osed with lupus are females between ages 15 and 44, but lupus also occurs in men, older people, and children. Lupus can be very hard to diagnose because symptoms vary from person to person, can come and go, and can mimic symptoms of other illnesses. is important to know the symptoms of lupus and to know if you are at risk for this disease. Here is a simple test to help you. Read each question and answer it in terms of your current AND past health. Please turn over this page for more information.

Let's Talk About It Webinar Series

The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Contact the LFA or a chapter that serves your area to find out how you can become involved in our mission and how we can help you.

Holmes Finance Manager

Kathy@lupusgreaterohio.org

I was diagnosed with lupus in 1989 and joined the Lupus Foundation of America, Greater Cleveland Chapter the same year. I have been able to grow with the organization, as it became the LFA, GOC. Knowing how important it was to have somewhere to turn when I was first diagnosed is what motivates me to do all I can to help our chapter continue in our mission. Being in remission for the past 20 years has enabled me to take an active part in the growth of our chapter.

Suzanne Tierney, CEO/President

Suzanne@lupusgreaterohio.org

I have spent the last 30 years dedicated to the lupus patients in Ohio. The goal is to provide a better quality of life until a cause or cure for lupus is found. My passion is providing programs to empower those affected by lupus so that they will have a better journey with lupus through education and emotional support. Lupus does not have to be a lonely, miserable, and misunderstood illness. My goal is to provide my chapter with the tools and resources to provide such services to all those in the state of Ohio.

GOC team to help our chapter continue to grow and help lupus patients for years to come.

Rita@lupusgreaterohio.org

I am a caring, collaborative, and resourceful nursing professional with over 30 years of experience in a variety of roles. I have a BS in Biology and French from John Carroll University and a Doctor of Nursing degree from Frances Payne Bolton School of Nursing at Case Western Reserve University. I am passionate about giving effective and empathetic customer service and education to patients, caregivers, families, colleagues and community organizations. I am honored to be a part of the LFA,GOC and dedicated to providing education, support, and resources to lupus warriors.

Bryan@lupusgreaterohio.org

After graduating from the University of Akron with a degree in Political Science, I worked on many local, state, and federal campaigns as well as in the United States Senate. After this, I worked on presidential and senate campaigns where I traveled across the country setting up small and large scale events. Here, as development manager at the LFA, GOC I will lean on my experience to create the best LFA walks. I am grateful for the opportunity to do more in my home-state of Ohio. Helping others has always been my passion and I plan on using this passion and drive to help as many lupus patients as I possibly can. On a personal note, I have two boys and a lovely wife who are the center of my world. I look forward to meeting all of you!

Willis Creative Design Manager

Mackenna@lupusgreaterohio.org

I’m the marketing manager and creative developer when it comes to strategizing new ideas for Lupus awareness. As a graduate from Bowling Green State University with a BFA in graphic design, I’ve always envisioned utilizing my skills to make a difference. My enthusiasm to help others through design has always been a passion of mine and having the opportunity to share and grow with the LFA, GOC team has been nothing but inspiring.

Beth@lupusgreaterohio.org

After attending Stony Brook University, I went on to work in the financial sector as a teller at a bank and in the wellness industry as a spa associate. At the LFA, GOC, I help with a variety of endeavors, including editing the magazine, planning events, and helping find ways to reach out to the community. In my free time, I enjoy reading poetry and listening to podcasts.

Kathy

Mackenna

Rita O. Piccin, BS, ND, RN Lead Patient Navigator

/Outreach Coordinator

Bryan Haynes Development Manager

Beth Coulter Administrative Assistant

THANK YOU FOR READING OHIO’S LUPUS MAGAZINE! FOR THE MOST UP-TO-DATE INFORMATION FROM THE WORLD OF LUPUS, PLEASE VISIT US AT WWW.LUPUSGREATEROHIO.ORG

THE FUNDING FOR THIS CAMPAIGN IS FROM AN EARMARK FROM THE STATE OF OHIO AND MANAGED BY THE OHIO DEPARTMENT OF HEALTH.

EMAIL INFO@LUPUSGREATEROHIO.ORG WITH ANY QUESTIONS OR CONCERNS.

GET IN TOUCH!

Lupus Foundation of America, Greater Ohio Chapter

12930 Chippewa Road, Brecksville, OH, 44141

Phone: (440) 717-0183

Tollfree: 1 (888) NO-LUPUS

FOLLOW