Suzanne

Greetings Fellow Lupians!

The cover of this issue has me captivated. It’s a joy to see both Breeze and Natalie, two stars I’ve come to know and admire over the years, gracing it.

Breeze and Natalie go hand in hand. They are both beautiful and passionate about living life to the fullest, no matter what life throws at them. I hope you enjoy reading their story. I know I certainly did.

What does taking the reins mean for us as lupus patients? For me, it means being more involved in my self-management when it comes to living with a chronic disease like lupus.

I get it. This is easier said than done. I do not have all the answers for my fellow lupians, but I do have the desire to help you along the way with the resources the chapter has to offer you. If you need some navigation, let us know.

Taking the reins for myself is a challenge, and I know it. I drown myself in my work. I am reckless when taking too much on or being non-compliant in my treatment plan. Like you, I need to be surrounded by others who know what I am going through so we can help each other.

The reality is that I fear I am not doing enough or that I may miss something that I could champion. I despise the word “can’t”. This word doesn’t create space for taking the reins and self-management. So, I have a lot of work to do. We can learn so much from each other through sharing and support.

I encourage you to take a deep dive into this magazine and see all of the work this chapter has done recently:

• We celebrated April with a jump on Minority Health Month. We collaborated on our first event with UH Cutler Center for Men. Over 300 people attended. We provided resources, screenings, education, and much needed lupus awareness.

• We had a team and table at the Men’s Minority Health Expo where over 600 attended.

• We attended the Advocacy Summit in Washington D.C.

• We hosted, in collaboration with Cleveland Clinic, the Scaling the Lupus Summit, which had over 100 in-person and online attendees.

• We tested our first statewide lupus support groups with all of our navigators and facilitators.

• We were also invited to the Rheumatologist Conference at Case Western Reserve University,The Nephrology 2024 Update, the Medical Dermatology Therapy Update III, and our National Annual Meeting.

• Our patient navigators worked tirelessly on calls and events across the state and garnered many city proclamations for Lupus Awareness Month.

• We planned and executed our first major fundraiser of the year. The Applied Invitational Golf Event was held at Signature Country Club on June 3, 2024. This event helped create awareness in the business community and raise much-needed dollars to support our mission.

Between all this, the staff and myself have been inundated with personal challenges. But we are blessed to have a fantastic team. Thanks to them for their passion and support of the lupus mission. Each day, we teach and encourage each other to take the reins. It certainly helps us to manage any issue in our lives better, whether lupus or anything else.

Blessings to all,

Suzanne Tierney President & CEO

Lupus Foundation of America, Greater Ohio Chapter

Pg. 1 - 2 Letter from Suzanne

Pg. 4-5 Patient Navigator Corner: June 2024

Pg. 6-8 Lupus Awareness Month

Pg. 9-10 2024 National Advocacy Summit

Pg. 11-12 Patient Story: Natalie Galaszewski

Pg. 13-14 Get Involved and Ways To Give

Pg. 15-17 Advocate, Educate, Celebrate!

Pg. 18-19 The Benefits of Equine Therapy

Pg. 20-22 Research and News

Pg. 23-26 How to Get the Most Out of Your Relationship with Your Lupus Doctor

Pg. 27 Podcast

Pg. 28-29 Could You Have Lupus?

Pg. 30 Staff Page

2326 1517 Advocate, Educate, Celebrate! How to Get the Most Out of Your Relationship with Your Lupus Doctor 6-8 Lupus Awareness Month

1112 Patient Story: Natalie Galaszewski