28 Podcast and Blog

PODCAST

My Lupus Living Room

We welcome you to My Lupus Living Room, a space where we get real about what it’s like to live with lupus. Join our host, chapter President and CEO, Suzanne Tierney, for candid conversations about topics that so often get overlooked. You’ll hear from our Ohio lupus community—including patients, caregivers, and medical experts - about the highs, lows, insights, and advice of living with lupus.

Check out our latest podcast, “The COVID-19 Vaccine from Patients’ Perspective.” The Covid-19 Vaccine is here, and we’re all eager to ensure our safety. But as a lupus patient, you might have more questions. Should you get it? Is it safe? Will it cause a flare? What are the side effects? What is the process? We hear you, and we want to answer your questions. On this episode of My Lupus Living Room, Suzanne sits down with lupus patients, Adrienne Fernandez and Kathy Holmes to talk about their experiences getting the COVID-19 vaccine.

This monthly podcast is available at LupusGreaterOhio.org and on major streaming platforms: Apple Podcasts, Spotify, Google Podcasts, Amazon Music, PodBean, and Stitcher. Go to the podcast streaming app or website of your choice, then search for My Lupus Living Room. Make sure you follow us so you don’t miss the latest episodes! Would you like to be on our podcast? Do you have a topic you want to hear about? Connect with us by emailing Info@LupusGreaterOhio.org or call 1(888) NO-LUPUS.

BLOG

Introducing Lupus Night Light

Check out our new blog on the LFA, GOC website! This will be a hub for personal stories and articles to help you navigate life with lupus. Learn more about how to cope with the disease and all the effects it can have on various areas of your life. Find tips, patient stories, and get facts about unique topics. Formal articles are so important for understanding lupus. But they can sometimes miss the perspective of what it’s really like to live with the disease. This blog is a channel to share information and insights from the people who know lupus firsthand: lupus warriors like you. Make sure to check your email for notifications about new blog posts. You can also go directly to the blog by visiting LupusGreaterOhio.org.

Do you have a question you would like answers to in our blog? Would you like to share your story with us? Let us know by contacting the office.

April was Minority Health Month

The month of April was dedicated to raising awareness about health disparities and about the disproportionate burden of premature death and illness in minority populations. Minority Health Month encourages action through health education, early detection, and control of disease complications. On April 1st, the Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) kicked Minority Health Month off with a new program, “Be Fierce: Addressing Health Disparities and Lupus” in collaboration with the Ohio Commission on Minority Health, Ohio Department of Health, and GSK/Us In Lupus. Our speakers included Leslie Vizcarra-Tierney, RN with the Lupus Foundation of America, Greater Ohio Chapter and Yvonka M. Hall, MPA of the Northeast Ohio Black Health Coalition. In addition, Cindy Fiske, RN from GSK/Us In Lupus joined the program to encourage the audience to tune into the tools and resources available to the audience, especially with regards to minority populations. Ms. Vizcarra-Tierney focused on lupus and health disparities and Ms.Yvonka Hall presented the importance of cultural competence and knowledge, the impact of policy change, and how these symptoms impact health and policies. When change is affected, outcomes can be reformed. The program was geared toward educating healthcare and community leaders. Both presenters urged the group to stay informed and help create policies to make change. The program is available to watch on the Chapter’s YouTube channel.

On April 10th, the Lupus Foundation of America, Greater Ohio Chapter hosted, “Be Fierce: Minority Perspectives,” a FaceBook Live program designed to open the lines of communication and learn from lupus patients with diverse backgrounds. The program was in collaboration with the Ohio Commission on Minority Health. A group of lupus patients shared their lupus journeys and successes with managing lupus. Panelists included; Aletha Acree, Natalie Lindsay-Smith, Tanya Quinones-Santiago, and Sonia Monray. There were also special guest appearances from State Senator Sandra Williams and State Representative Stephanie Howse. The program is available to view by visiting the LFA, GOC Facebook page or Youtube channel. On April 15th, our chapter networks joined together to present “Let’s Talk About It- Health Disparities and Lupus.” Dr. Pamela Payne-Foster, MD, MPH of the University of Alabama College of Community Health Sciences took time to discuss how lupus disproportionately impacts women and minorities, as well as how public health disparities increase the time to diagnosis and access to care. If you missed the live presentation, you can view the recording on our Chapter website. Thank you to everyone that participated in the month-long events. By asking questions, increasing knowledge, and building cultural competence, lupus constituents can help reform outcomes for minority communities. Taking this important step helps to raise awareness and impact health policies and systems. A special thank you to the American College of Rheumatology and the Center for Disease Control and Prevention for partnering with the Lupus Foundation of America to help continue the conversation to “Be Fierce and Take Control.”

** Partial funding by the Ohio Commission on Minority Health *** Partial funding by an earmark from the State of Ohio and managed by the Ohio Department of Health. *** Partial Funding by GSK/Us In Lupus

“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.

Leslie Vizcarra

Vice President of Operations & Patient Navigator Leslie@lupusgreaterohio.org

Kathy Holmes

Finance Manager Kathy@lupusgreaterohio.org

Adrienne Rice-Fernandez

Lead Project Coordinator Adrienne@lupusgreaterohio.org

Victoria Hornikel

Fundraising & Events Coordinator Victoria@lupusgreaterohio.org

I’m a registered nurse and have a BSN from Ohio University. My primary role is to help people understand lupus and provide general health education. I strive to build working relationships, solve problems and support patients while they learn how to best manage their symptoms. I started volunteering for the LFA, GOC over 20 years ago. My dedication is driven with a passion to help fight lupus and was inspired by all the people I have met along the way. 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. I help with anything from grant writing, coordinating advocacy efforts, managing projects, writing/editing and whatever else our office needs. I’m also a patient, so finding a cause and a cure is especially important to me. I love speaking with patients and caregivers when they call the office because I can empathize and offer a sympathetic ear. I joined the organization two years ago, shortly after graduating from Cleveland State University with a degree in Nonprofit Administration. If you call in, I will likely be the one greeting you. I also manage our digital and print communications, constituent database, the walk, and the chapter website. I am so grateful to have started my career at the LFA, GOC and to be learning from this brilliant team of skilled and passionate lupus advocates.

Aletha Acree

Community Outreach Coordinator

Aletha@lupusgreaterohio.org I am the devoted mother of two wonderful sons, they are the reason I fight lupus daily. I share my story everyday hoping that it might help or encourage someone else on their journey. I try to leave lupus patients with these thoughts and that is keep your environment positive in all aspects and do what you can while you can!

Stephanie Holmes

Administrative Assistant

Stephanie@lupusgreaterohio.org I have a very long history with the LFA, GOC. My mom has lupus and she has worked here my entire life. I have seen this organization grow into what it is today, and I am so honored that I get use my skills and learn new ones. As a little girl, I would seal envelopes while my mom was working and now, I am posting to social media and editing videos for the LFA, GOC. I graduated from Capital University with a BA degree in media communications and a minor in public relations.

Lindsay Rinehart

Marketing Coordinator Lindsay@lupusgreaterohio.org I am a master of marketing and all things design. My passion for communication, design, and advocacy led me to a rewarding career in non-profit marketing through organizations like the American Lung Association and LFO, GOC. I love helping to empower patients by listening to their stories and helping to spread the word so others might be encouraged through their lupus journeys. When I’m not designing content calendars or strategizing marketing plans, I’m an avid reader, traveler, and dedicated dog parent.

OUR NEW WEBSITE IS NOW LIVE!

THANK YOU FOR READING THE LOCAL CHAPTER MAGAZINE! OUR NEW WEBSITE IS LIVE. TAKE A MOMENT TO VISIT LUPUSGREATEROHIO.ORG FOR NEW FEATURES, IMPROVED CONTENT, AND USER-FRIENDLY CAPABILITIES. WE WELCOME YOUR FEEDBACK.. 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 COMMENTS ABOUT THE WEBSITE.

Get in Touch:

Instagram.com/lupusgreaterOH