Living With Lupus - Issue 15 by lupusgreaterohio

LIVING WITH LUPUS DECEMBER 2023 | ISSUE 15

TASTY HOLIDAY APPETIZERS! The LFA, GOC staff shares some of their favorite appetizer recipes for the holiday season. / p. 08

GET INVOLVED & WAYS TO GIVE Find different ways you can help the lupus community and the LFA, GOC. / p. 19

COMBAT THE WINTER BLUES

Ohio winters can be tough, but there are ways to fight seasonal affective disorder. / p. 23

Suzanne Greetings, The most wonderful time of the year is upon us, so says the world. Or maybe not. It really depends on the season of life that you are currently in. The office staff reminded me that not everyone feels like I do about this time of year. The reality is that I love this time of year for multiple reasons, though I know that many people do not share the same feelings. I wanted to share all the wonderful things that the season has to offer, but they warned me against it. So, here is my message to you during this season. If you live in Cleveland, as I do, we have many seasons to enjoy. The winter snow spreads a sprinkle of fresh white powder that glistens upon the now dead fallen leaves, providing a cleansing of sorts. The chilled temperatures give me a desire to slow down and snuggle up with those close to me around a warm fire. The snow piles in my driveway do present a challenge, but they do not rob me of the pleasure of the season. I believe the key to getting through this time of year is our perception. Do you have a glass half-full or glass half-empty mentality? For example, a glass half-empty person thinks making cookies with my grandchildren is going to be a lot of work and very messy! A glass half-full person thinks what a wonderful memory I am creating and sharing with those I love. Here is another example. I dread going into the basement to pull out all the boxes of decorations and especially the tangled lights. This is half-empty thinking! A glass half-full thinks about the beautiful surroundings filled with festive colors and treasured holiday keepsakes. Attitude and perception changes our perception of this time of year. It can be hard when you are having a hard time to think of the world around you as half-full. But with daily practice, we can find more joy, especially during this wonderful time of year. Try to make a happy memory whenever you can and not focus on the negative. Find that half-empty glass and fill it with joy.

Bake cookies, pull out some decorations, and add some excitement with colors and textures to your surroundings. Visit a friend or send a card or two, the kind that goes in a real mailbox. Take a drive and look for the beautiful, decorated houses or city centers. Get that hot cocoa out and find the bag of stale marshmallows. Look at Mother Nature and ponder how she can change our surroundings and enjoy the simple miracles of the season. What about Hallmark movies??? Pull out those old Christmas carols or tunes from years past. If you have a church, go to it. Find out what is going on in your neighborhood. Visit a nursing home or volunteer. When you can, share your presence with the world. If you have a budget for the holidays, stick to it. Bigger is not better. Watch a child open a gift; they do not need ten. I remember those early young years of my life when the budget was zero. Like seasons, this will pass. When mapping out your life, I hope you will try to see the glass half-full, especially during this wonderful time of year. We all seek peace, joy, love, good health, and an abundance of blessings. We have a better chance of attaining these things when the glass is half-full. My wish for you this holiday season is that you are able to fill your glass with joy and laughter so that you too can share in the wonder of this time of year. May you be blessed abundantly,

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

CONTENTS

Pg. 1 - 2 Letter from Suzanne Pg. 4-5 Patient Navigator Corner Pg. 6-7 Walk to End Lupus Now® Pg. 8-11 Staff Favorite Holiday Appetizers

4-5

Patient Navigator Corner

Pg. 12-14 Holiday Traditions Pg. 15-17 Patient Story: Terri Kreider Pg. 18 Blog and Podcast Pg. 19-20 Get Involved & Ways To Give Pg. 21-22 Research and News Pg. 23 -25 Beating the Winter Blues by Alex Acevedo Pg. 26 Winter Word Search

8-11 Staff Favorite Holiday Appetizers

Pg. 27 Fun Chilly Season Activities Pg. 28-29 Could You Have Lupus? Pg. 30 Staff Page

15-17

Patient Story: Terri Kreider

1214

Holiday Traditions

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PATIENT NAVIGATOR CORNER DECEMBER 2023 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.

Update: Lupus Foundation of America, Greater Ohio Chapter Assistance Programs In the February, 2023 issue of Living with Lupus Magazine, the Patient Navigator Corner presented the LFA, GOC’s Assistance Programs. These programs were created as a response to a needs assessment survey of lupus warriors in the state of Ohio. The results showed that lupians would benefit from some help with healthcare transportation, medical financial assistance, and mental health counseling. The Chapter submitted grant proposals and was successful in receiving funding for the programs. We want to share with you some of the data we collected from these programs. From October 2022 - June 2023: • 19 patients received an average of $191.18 assistance for out-of-pocket medical expenses 4

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• 10 patients took 79 roundtrip and 3 single-trip Uber rides to healthcare appointments • 16 patients were referred for mental health counseling with Signature Health The majority of lupians who participated in and sent feedback about these programs were very satisfied with the help they received. We are happy that our funding has been continued for these programs, and we are also pleased to announce that we have received funding for a new Food Assistance Program. We want to make sure that all lupus warriors know about and take advantage of these programs if they qualify. In order to get started with any of these programs, you will need to complete the CASE SDOH Needs Assessment form (Case Assessment Systems Evaluation - Social Determinants of

Health). This is an assessment that collects information about barriers to care that a lupus patient may have. After the CASE SDOH Needs Assessment Form is completed, a patient navigator will contact you to discuss the program(s). Healthcare Transportation Program This program gives transportation assistance to lupus patients who have difficulty getting to and from healthcare appointments. We look to see if there are health transportation services in your area. If none exist or if the local services do not work for you, we have a partnership with Uber Health. If this is a good fit for you, we can schedule a ride with Uber Health to take you to and from your healthcare appointment. Medical Assistance Program This program supplies financial assistance to lupus patients who have out-of-pocket medical expenses. Copies of receipts

for current medical expenses that you have already paid are required. Current receipts refers to those medical expenses that have been paid within 2 months of the CASE form submission. Some examples of covered expenses are doctor and medication copays, lab, procedure, hospital, therapy, dental, and vision care bills. Food Assistance Program This program provides a gift card to a grocery store, which may be used for food purchases only. After using the gift card, we ask the lupus patient to send us a copy of the receipt(s) for the food items that were purchased. This helps us keep track of spending for the program. Mental Health Counseling Assistance Program with Signature Health This program provides assistance for mental health counseling evaluation and therapy sessions. If you do not have a

Medicaid or Medicare insurance plan that is accepted by Signature Health, the Lupus Foundation of America, Greater Ohio Chapter will cover the costs of one evaluation session and up to four counseling sessions. These programs are available while funding lasts. The assistance cap total per person is $200 every six months that can be used for up to three programs: Medical, Healthcare Transportation, and Food. For Mental Health Counseling, the cap is one evaluation session and four counseling sessions every six months (if Signature Health does not accept the patient’s health insurance or if the patient has no health insurance). You may participate in one, two, three, or all four programs.

Needs Assessment Form: https:// forms.gle/7BcT9nTFDtL9nDLY6

A Patient Navigator will then contact you.

For more information or to speak with a Patient Navigator, please call us at 1 (888) NO-LUPUS, (888) 665-8787, (440) 717-0183 or email us at info@ lupusgreaterohio.org. We’d love to hear from you! The patient navigators wish you and your families a joyous holiday season and a very happy, healthy, peaceful, and prosperous New Year!

If you are interested in any of these programs, please complete the CASE SDOH

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2023 RECAP The Walk to End Lupus Now® provides people affected by lupus and their families with the opportunity to come together for one purpose: ending lupus. This year, the Lupus Foundation of America, Greater Ohio Chapter held walks in Cleveland and Columbus. The Walk to End Lupus Now® brings the lupus community together to raise money for lupus research, increases awareness of the disease, and rallies public support for those who suffer from its impact. The LFA, GOC would like to thank those who came out in support of the fight to end lupus in 2023. Participants joined together at the Center of Science and Industry (COSI) in Columbus on August 26

By Beth Coulter and Bryan Haynes

and Margaritaville-Cleveland on September 30 to walk together toward a lupus-free future. We want to extend our deepest congratulations to Rosie Chapman and Ariel Shelton, our top fundraisers. The combined efforts of these ladies significantly contributed to our fundraising success. Rosie and Ariel will be joining Suzanne in Washington, D.C. to join hundreds of fellow lupians from across the country to attest to their legislators about the burden of lupus. Thank you to all who championed the walks by leading teams, donating funds, and spreading awareness. Collectively, we raised over $80,000! These funds are invalua-

ble to our mission of eradicating the effects of lupus on patients and families across Ohio. We couldn’t have done it without you! Special thanks to all our volunteers who helped foster days of community, fun, and togetherness to empower lupus warriors everywhere. Likewise, we are grateful for the support of our sponsors who were instrumental in making the Walk to End Lupus Now® our biggest fundraiser of the year!

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The LFA, GOC Deeply Appreciates the Support of Our Incredible Sponsors: GSK Us in Lupus

Shout Out to Our Walk-Day Entertainment!

Congratulations to Our Top Fundraisers!

Flower Entertainment Byron Eulinberg Liz Senn Steve Cambell

Ariel Shelton (Team: A Beautiful Storm) Rosie Chapman (Team: Chronically Awesome) Terri Krieder Rachael Denny Lauren Glause (Team: Lauren’s Lupeneers) Kelly Perhach (Team: Just a Little Luppie) Marybelle Moyet (Team: Flare Fighters) Dr. Tanya Quiñones-Santiago (Team: Dr. Q’s Lupus Warriors) Leslie Vizcarra (Team: Lupus Angels) Amanda Kepic (Team: Amanda’s Anchors) Tiffany Thiede (Team: Thiede & Fergi Butterflies)

Do you have suggestions for next year’s Walk to End Lupus Now®!? Keep an eye out for the opportunity to share your ideas. If you’d like to help with next year’s walk, reach out today to join the 2024 Walk Committee! Contact our Development Manager, Bryan Haynes. Bryan@lupusgreaterohio.org

(440) 717-0183

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Favorite Holiday Appetizers BY THE LFA, GOC STAFF

Vegan Jalapeno Popper Dip Shared by Adrienne Fernandez Recipe Credit: Nora Taylor @ noracooks.com Photo Credit: Nora Taylor @ noracooks.com

Ingredients 1 ½ cups raw cashews 1 ½ cups water 2 teaspoons garlic powder 1 ½ teaspoons salt ¾ cup diced jarred jalapeno pieces 2 cups vegan cheddar cheese shreds Breadcrumb Topping 1 cup panko breadcrumbs 3 tablespoons vegan butter Fresh parsley for serving (optional) Instructions Preheat the oven to 425°F. Soak the cashews. Heat up about 3 cups of water in a tea kettle or small pot. Pour the boiling hot water over the cashews and let them soak for 5 minutes. Drain them when ready to blend. In a high-powered blender, add the soaked and drained cashews, fresh water, garlic powder, and salt. Blend until very smooth. Transfer the mixture to a greased oven-safe dish (9-inch round or 8x8 approximately). Stir in the diced jalapenos and vegan cheese shreds. Combine the breadcrumbs and melted butter in a small bowl, then sprinkle over the top of the cheese dip. Place in the oven for 15-20 minutes until warm and golden brown on top. Serve immediately with chips or pretzel sticks and enjoy!

Goat Cheese & Pistachio Covered Grapes Shared by Rita Piccin Recipe Credit: Sammi Haber Brondo, MS, RD https://www.instagram.com/veggiesandchocolate/reels/ Photo Credit: Caitlin https://kaleforniakravings.com/goat-cheese-grape-balls/

Ingredients 10-15 grapes 8 oz. goat cheese ½ cup chopped roasted and salted pistachios Honey and sea salt (optional) Instructions Wash and dry the grapes. Wrap each grape in about a tablespoon of goat cheese, using your hands to roll evenly. Roughly chop 1/2 cup of roasted, salted pistachios. Roll the goat cheese balls in the pistachios, using your hands to make sure everything sticks. Refrigerate before serving. Optional: drizzle with honey and sprinkle with sea salt. 8

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Air Fryer Mac and Cheese Bites Shared by Beth Coulter Recipe Credit: Samantha @ https://www.everydayfamilycooking.com/ Photo Credit: Samantha @ https://www.everydayfamilycooking.com/

INGREDIENTS 2 cups of cold leftover mac and cheese 1 cup of italian bread crumbs 1/2 teaspoons salt 1/2 teaspoons garlic powder ½ teaspoons dried parsley 1/4 teaspoons paprika 2 eggs, beaten 1/2 cup of marinara for dipping INSTRUCTIONS Using cold leftover mac and cheese and a cookie scoop, scoop out the mac and cheese and then roll using the palm of your hand. Place them on a piece of parchment paper and once they are all rolled, place them in the freezer 30 minutes to an hour. In a small bowl, mix the bread crumbs and seasonings. In another small bowl, beat the eggs and set them aside. When your mac and cheese balls are chilled, roll them into the egg mixture and then into the bread crumbs. Preheat your air fryer to 350°F. Spray the tops of the bites to make them extra crispy. Cook for 5 minutes, and then flip and cook for an additional 4-5 minutes till they are golden. Pigs in a Blanket (THE BEST) Shared by Mackenna Willis Recipe Credit: Alyssa Rosello @ delish.com Photo Credit: @ delish.com

Total Cooking Time - 25 minutes Prep time 10 minutes 8-12 serving(s) Ingredients All-purpose flour 1 (8 oz tube) of crescent rolls 1 (12 oz) package of beef cocktail franks 4 tbsp of unsalted butter Coarse salt or sea salt Parsley (optional) to garnish on top Instructions Preheat the oven to 375°F. On a lightly floured surface, unroll crescent sheets and tear dough where perforated. Cut each triangle into 3 smaller triangles. Place 1 cocktail frank on the thick side of each triangle and gently roll to the thinner side. Move to a medium baking sheet and line with parchment paper to prevent sticking. Brush melted butter and sprinkle desired amount of coarse/sea salt. Bake pigs in a blanket until golden, 12 to 15 minutes. Garnish with parsley or your favorite seasoning and serve Dipping Sauce Suggestions This appetizer tastes great on its own, but if you want a little more zing, here are some of my favorite sauces that pair well with this dish: Honey mustard, Cheese, Buffalo, Spicy Ranch LIVING WITH LUPUS MAGAZINE

Easy Appetizer Recipes: Deviled Eggs Shared by Kathy Holmes Ingredients 8 hard boiled eggs ¼ cup mayo ⅓ cup thick Greek yogurt, (Fage or Chobani recommended) 1½ teaspoons sweet pickle relish ½ teaspoon Dijon mustard Sea salt Toppings Chopped chives, Celery seed, Smoked paprika. Instructions Slice the eggs in half lengthwise and remove the yolks. In a small food processor, combine the egg yolks, mayo, yogurt, relish, and mustard and pulse until smooth. Season to taste with salt. Scoop the mixture into the egg white halves (or use a piping bag, if you prefer). Sprinkle with desired toppings. Notes: A fun spicy option: this ﬁlling is delicious with a few jalapeño or pickled jalapeño slices blended into the mixture.

Sausage-Stuffed Mushrooms Shared by Bryan Haynes Recipe courtesy of Ina Garten

Ingredients 16 extra-large white mushrooms 5 tablespoons good olive oil, divided 2 1/2 tablespoons Marsala wine or medium sherry 3/4 pound sweet Italian sausage, removed from the casings 6 scallions, white and green parts, minced 2 garlic cloves minced 2/3 cup panko crumbs 5 ounces mascarpone cheese, preferably from Italy 1/3 cup freshly grated Parmesan 2 1/2 tablespoons minced fresh parsley leaves Salt and freshly ground black pepper Toppings Chopped chives, Celery seed, Smoked paprika. Instructions Preheat the oven to 325°F. Remove the stems from the mushrooms and chop them finely. Set aside. Place the mushroom caps in a shallow bowl and toss with 3 tablespoons of the olive oil and Marsala. Set aside. Heat the remaining 2 tablespoons olive oil in a medium skillet over medium heat. Add the sausage, crumbling it with the back of a wooden spoon. Cook the sausage for 8 to10 minutes, stirring frequently until it’s completely browned. Add the chopped mushroom stems and cook for 3 more minutes. Stir in the scallions and garlic and cook for another 2 to 3 minutes, stirring occasionally. Add the panko crumbs, stirring to combine evenly with all the other ingredients. Finally, swirl in the mascarpone and continue cooking until the mascarpone has melted and made the sausage mixture creamy. Turn off the heat, stir in the Parmesan, parsley, and season with salt and pepper to taste. Cool slightly. Fill each mushroom generously with the sausage mixture. Arrange the mushrooms in a baking dish large enough to hold all the mushrooms in a snug single layer. Bake until the stuffing for 50 minutes until the stuffing is browned and crusty. 10

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Buffalo Chicken Dip Shared by Alex Acevedo Recipe courtesy: Southernliving.com Photo credit: Jessica Randhawa

Ingredients 1 (8-oz.) pkg. cream cheese, softened 4 oz. sharp cheddar cheese, shredded (about 1 cup) 4 oz. pepper jack cheese, shredded (about 1 cup) 1/2 cup refrigerated bottled ranch dressing (such as Marie's) 1/2 cup hot sauce (such as Frank's RedHot) 3/4 tsp. black pepper 1/2 tsp. garlic powder 4 cups chopped cooked chicken (from 2 rotisserie chickens) 1/2 cup thinly sliced scallions (from 4 scallions), divided Cooking spray Carrot sticks, celery sticks, pita chips, or baguette for serving Instructions Preheat oven to 350°F. Stir together cream cheese, cheddar cheese, pepper Jack cheese, ranch dressing, hot sauce, pepper, and garlic powder in a large bowl until well blended. Gently fold in chicken and half of the scallions. Transfer to a lightly greased (with cooking spray) 13- x 9-inch baking dish, and Smooth top. Bake in preheated oven until center is hot and edges are bubbly, 20 to 25 minutes. Remove from oven, and top with remaining scallions. Serve with carrots, celery, pita chips, or sliced baguette.

Prosciutto-Wrapped Shrimp and Melon Shared by Suzanne Tierney Recipe Credit: Food Network Kitchen @ https://www.foodnetwork.com/recipes/ food-network-kitchen/prosciutto-wrapped-shrimp-and-melon-3811990 Photo Credit: Food Network Kitchen

Ingredients Kosher salt 16 large shrimp, peeled and deveined (about 1 pound) 16 small, thin slices of melon (cantaloupe or honeydew) 6 tablespoons of extra-virgin olive oil 3 tablespoons of white balsamic vinegar 1 teaspoon of honey Freshly ground pepper 8 thin slices of prosciutto, halved lengthwise ½ cup fresh basil ½ cup fresh parsley Instructions Bring a large pot of salted water to a boil. Add the shrimp and simmer until cooked through, about 2 minutes. Drain and rinse under cold water; pat dry and transfer to a large bowl. Add the melon, 4 tablespoons olive oil, 2 tablespoons vinegar, the honey, 1/2 teaspoon salt and a few grinds of pepper; gently stir. Let marinate 15 minutes. Wrap 1 melon slice and 1 shrimp in a piece of prosciutto; secure with a toothpick. Repeat with the remaining ingredients. Transfer the remaining marinade to a blender. Add the remaining 2 tablespoons olive oil, +1 tablespoon vinegar and the herbs; puree. Season with salt and pepper. Serve the prosciutto-shrimp bundles with the dressing.

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Holiday Traditions

“Putting up the Christmas tree Thanksgiving day morning.” - Heather Ward

“Every year we get a real tree with our kids. Come home to decorate it. My husband makes hor d'oeuvres while me and the kids decorate the tree while we listen to Christmas music and Christmas movies. Every year I get a Christmas ornament to give to each of my kids and husband that commemorates the year. So when my children move out and get their own tree they will have ornaments from their childhood.” - Melissa Hotchkiss Wright

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There is one certainty every Christmas in my family. At 8 PM on Christmas Eve the 24-hour “A Christmas Story” marathon will get turned on. And no one is allowed to change the channel until 8PM on Christmas Day.

“Every year, my family has a traditional Slovakian Christmas Eve Dinner. We each drizzle honey on oplatki (a bread wafer) and share what we’re thankful for.” - Beth Coulter

- Alex Acevedo

“My grandma, who is now in Heaven, needlepointed my stocking as well as both of my daughters. When I hang the stockings each year I always think of her. The stockings are one of my favorite things about Christmas.“ - Adrienne Fernandez

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“My great-aunt would purchase and mail one pound of torrone (Italian nougat candy) from Italy to each of her nieces and nephews in the United States and Canada. She would lovingly wrap the candy so that it would not break apart, hand-sewing each package in a cloth wrapper. It would arrive whole and delicious several weeks before Christmas each year.” - Rita Piccin

“When I was a child, my grandma would always set up the express train set around our family’s Christmas tree before making cookies. I remember the joy I felt from smelling the sweet aromas of the kitchen as I watched the train singing classic Christmas songs.” - Mackenna Willis

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PATIENT S TO R Y My Niece Is My Hero By Terri Kreider

At the young age of 28, my

I watched as this very athletic

is one hell of an amazing lupus

niece, Rebekkah Dee… Bekkah

(rising soccer star) young lady

warrior!!

or Bekks, as I call her, has gone

found herself unable to do the

through more medical proce-

things she loved and enjoyed.

After high school, Bekks went

dures, tests, hospital stays, and

Throughout middle & high

on to college, attending Wright

near-death moments than I

school Bekkah was in and out

State University to obtain a

have at my ripe ol’ age of 61.

of hospitals for either testing,

nursing degree. She was called

procedures, or long-term stays

to the nursing profession be-

Bekkah was in grade school

because of her illness. She has

cause of all the amazing nurses

when she started having medi-

never once given up, though.

who cared for her. Bekkah graduated with a BSN and RN

cal issues that the doctors could

degree in December of 2017.

not pinpoint a reason or cause

Her spunk, her determination,

for. When she was 10 years old,

and her fight to not let the dis-

the doctors finally had a diag-

ease win is so inspiring! I cannot

After a few years of working at a

nosis. Lupus. LUPUS!!! She was

even put into words how much

local hospital after graduation,

only 10 years old!!

I admire who she is… besides

COVID hit. As a lupus warrior,

being my awesome niece, she

she couldn’t risk catching COV-

MAGALIVING WITH LUPUS MAGAZINE ZINE

15 16

ID, but she didn’t let it stop her!

just for a quick visit, we always

ories, with all of our family

Throughout her flares and the

make plans to hang out and

members together!

possibility of getting sick, she

catch up. Sometimes we grab

persevered. She continued to

a bite to eat, take a painting or

For the past 5 years, I have

work and share her passion, her

pottery class, or just go for a

participated in and fundraised,

love, and her caring heart with

walk. This auntie’s heart em-

in my niece’s honor, with the

not only her patients but also

braces every minute we share!

Lupus Foundation of America,

the families of her patients.

This year, Bekkah will be home

Greater Ohio Chapter’s Walk To

for both Thanksgiving AND

End Lupus Now®. My first year, I

Whenever Bekks comes home,

Christmas!! I am looking for-

raised around $50. But I was still

either between assignments or

ward to creating more mem-

proud of myself! This year, for

Terri with her niece, Bekkah

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the first time, I raised just a little

their cousin as much as I do! I

and all the warriors. Yep, my

over $1000! My grambabies

enjoy fundraising in honor of

lupus warrior fighting niece,

have assisted me for the past

Bekkah. Her fight inspires me

Rebekkah Dee, is my HERO!

3 years with my “Lupus Sucks

to keep going and to

Lemon(ade) Stands”. They love

fundraise for a cure... for her

“Throughout her flares and the possibility of getting sick, she persevered. She continued to work and share her passion, her love, and her caring heart with not only her patients but also the families of her patients.”

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LFA,GOC BLOG & PODCAST My Lupus Living Room Episode 27 - A Covid Story In this episode of My Lupus Living Room, Adrienne shares her recent experience with Covid and the struggles she faced. Suzanne is also joined by our Lead Patient Navigator, Rita Piccin BS, ND, RN. The group discusses the uptick in cases, getting the new vaccine, and what patients should do to protect themselves.

Episode 28 - Alex With Suzanne on vacation, our Lead Project Coordinator, Adrienne Fernandez takes the helm for this episode of My Lupus Living Room. Adrienne sat down with Alex, our Digital Assets Manager, to learn a little more about him and what he does here at the LFA, GOC. They also give a sneak peak at what our constituents can expect from the chapter in the next year!

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.

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GET INVOLVED

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

Instagram.com/lupusgreaterOH Facebook.com/lupusgreaterOH Twitter.com/lupusgreaterOH

Become a Member One-year: $25 Lifetime: $200

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.

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

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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! 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

lupusgreaterohio.org/get-involved

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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

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.

Through Your Job • Employer Matching Gift Program Ask your employer if they match charitable contributions made by their employees. • Combined Federal Campaign CFC #51890

• 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.

Investing • Stock or Other Securities • Life Income Plans Pooled Income Fund Charitable Remainder Trusts • Creating Healthier Communities CHC #9963 • United Way Campaigns

$1,000 SUMMITS FOR OHIO

FUNDS EDUCATIONAL

SUPPORTS 8 NEW PATIENT EDUCATION CLASSES

$500 $250

$100

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EQUIPS LFA,GOC PATIENT NAVIGATORS WITH TRAINING PROVIDES FINANCIAL AID FOR MEDICATION CO-PAYS

$45

HELPS A LUPUS PATIENT WITH TRANSPORTATION

SENDS AN INFORMATIONAL PACKET

RESEARCH NEWS & UPDATES New Investigational Drug for Lupus Nephritis Receives Clearance from FDA for Clinical Trial Evaluation Nkarta Inc., received Investigational New Drug (IND) clearance (when a clinical study sponsor receives approval to administer an investigational drug or biological product to humans) from the U.S. Food and Drug Administration (FDA) for their investigational therapy, NKX019, for the treatment of lupus nephritis (LN, lupus-related kidney disease). In the first half of 2024, researchers look to enroll 12 study participants with refractory LN for the multi-center, open label, dose escalation clinical trial to assess the safety and clinical activity of NKX019.

NKX019 is a chimeric antigen receptor natural killer (CAR NK) cell therapy that targets B cells. NK cells are lymphocytes which help destroy infected and diseased cells in your body. NKX019 is engineered by collecting NK cells from healthy donor blood and modified with a CAR designed to target CD19, a protein found on the surface of B cells. CD19 plays a role in several cancers and autoimmune diseases. Additionally, NKX019 is being tested as a treatment for non-Hodgkin lymphoma.

Continue to follow the Lupus Foundation of America for updates on NKX019, as well as other lupus drug development news. Learn more about medications used to treat lupus. https://www.lupus.org/news/ new-investigational-drug-for-lupus-nephritis-receives-clearance-from-fda-for-clinical-trial

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2023 Updates to EULAR Recommendations for Management of Systemic Lupus Erythematosus Begins in Phase 2B Study The European Alliance of Associations for Rheumatology (EULAR) has updated its recommendations for the management of systemic lupus erythematosus (SLE) based on emerging new evidence. For the 2023 updated recommendations, a Task Force of world-leading experts in the field of SLE from four continents were assembled to conduct a systematic literature review. The Task Force agreed on 5 overarching principles and condensed recommendations to a total of 13. To set the overall framework for approaching treatment in people with SLE and the role of physician-patient interaction, the group agreed on five principles, such as SLE requires multidisciplinary, individualized management with patient education and shared decision-making, taking into consideration the costs to patient and society, and SLE disease activity should be assessed at each clinic visit (the frequency depending on physician’s discretion), with eval-

uation of organ damage (at least annually), using validated instruments. The Task Force agreed upon 13 recommendations in the areas of optimal use of commonly used drugs (1-4), organ manifestations (5-12) and additional treatments and comorbidities. Recommendation highlights include: • Hydroxychloroquine (HCQ) should be given to all people with lupus at a target dose of 5 mg/kg real body weight/day and should consider the individual’s risk for flares and retinal toxicity. • Glucocorticoids should be used as ‘bridging therapy’ during periods of disease activity, and should be minimized and, when possible, withdrawn for maintenance treatment. • Considering cyclophosphamide and rituximab in organ-threatening and refractory disease, respectively. • Different patient characteristics

should be considered in the management of lupus nephritis, using a combination therapy with either belimumab or a calcineurin inhibitor (an immunosuppressive that works to inhibit calcineurin, an enzyme that activates T-cells in the immune system). • A holistic approach to care for people with lupus requiring immunosuppressive therapy and those in need of complimentary therapies. • Defining quality indicators in a table format to serve as a checklist for providers and support adherence. The new 2023 recommendations provide updated guidance to physicians treating SLE around the world, as well as recommendations for future research. https://www.lupus.org/ news/2023-updates-to-eular-recommendations-for-management-of-systemic-lupus-erythematosus

Increasing Use of Biologics in the Treatment of Systemic Lupus Erythematosus People with systemic lupus erythematosus (SLE) in the United States and countries like France, Germany, Italy, Spain, and the U.K. (EU5) are increasingly being treated with biologic therapies versus glucocorticoids. A new report found out that biologic treatment with therapies like Benlysta (belimumab) and Saphnelo (anifrolumab) grew 32% in both the US and EU5 compared to 2022. Data from 1,011 people with SLE in the U.S. and 1,257 people with SLE in the EU5 was analyzed. American rheumatologists were found to be 22

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prescribing biologics more often than their EU5 counterparts. Additionally, 20% of Americans with moderate to severe SLE were more likely to receive biologic treatment compared to people in the EU5. Regardless of disease severity, Benlysta use in people with kidney involvement has increased in both the U.S. and EU5; however, for those without kidney involvement, Americans have expanded use of the drug, while those in the EU5 have not. While the use of Saphnelo is slowly increasing across the U.S. and the EU5, growth in the U.S. is hindered due to reimbursement

issues and ongoing clinical trial study for use in lupus nephritis which is not expected to yield results until 2028. When taken long-term, glucocorticoids have been associated with side effects like high blood pressure, diabetes, infection and osteoporosis. EU treatment guidelines recommend against longterm use of glucocorticoids. Learn more about medications used to treat lupus. https://www.lupus.org/news/ increasing-use-of-biologics-in-the-treatment-of-systemic-lupus-erythematosus

BEATING THE WINTER BLUES By Alex Acevedo It’s the middle of January. You’re still reeling from the chaos of a busy holiday season. Temperatures haven’t climbed above 30 degrees for weeks, and the color outside has alternated between gray and black for what seems like an eternity. Winter has sunk its claws in like a house cat trying to escape a veterinary appointment. Your only thoughts seem to revolve around carbheavy meals and sleep. Sound familiar? For many Ohioans, winter is a four letter word that has about the same favorability rating as tax season. For lupus patients, it can be particularly challenging as the constant cold wreaks havoc on your bodies. As blood vessels constrict to combat

heat loss, pressure begins to build in the head, joints, and other extremities. The increased pressure causes circulation to slow, and the associated lack of oxygen begins to cause pain & discomfort. A flare ensues. The prolonged lack of daylight combined with constant flare worthy weather means that lupus patients are much more likely to be affected by things like the ‘winter blues,’ or seasonal affective disorder (SAD). Fortunately, a plethora of research & studies over several decades have found proven ways to help combat them. The first thing you will want to determine is if you’re experiencing a common case of ‘winter blues’ or if it is something more

prolonged like seasonal affective disorder (SAD) or depression. Your medical team is the only one who can accurately make that determination. Sharing things like symptoms, their duration, and other lifestyle factors will help the experts make that determination. “Winter blues’ is a general term, not a medical diagnosis. It’s fairly common, and it’s more mild than serious. It usually clears up on its own in a fairly short amount of time,” says Dr. Matthew Rudorfer, a mental health expert at the National Institutes of Health (NIH). Additionally, winter blues are often linked to a specific event like stressful holidays or reminders of loved ones who LIVING WITH LUPUS MAGAZINE

have passed. “Seasonal affective disorder, though, is different. It’s a well-defined clinical diagnosis that’s related to the shortening of daylight hours,” says Rudorfer. “It interferes with daily functioning over a significant period of time.” A key difference with SAD, is that it is consistent and follows a pattern with onset usually occurring when the seasons change and symptoms remaining until spring or summer. If a physician or clinician determines that you have SAD, they may prescribe medication depending on the severity of your symptoms. Whether you’re experiencing ‘winter blues’ or are diagnosed with SAD, there are things you can do on your own to combat both under the guidance of your medical team. EMBRACE IT In 2015, researcher Kari Leibowitz spent a year in Tromso, Norway. This area is famous for its extreme periods of light and dark throughout the year which includes a 2.5 month period called the Polar Night in which the sun does not rise at all. She was amazed to find that even though it is dark for 75 days straight, people in Tromso experience extremely low rates of seasonal depression or mood disorders. “I started realizing how much I had brought my own American conception of winter into this research study.

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I just sort of assumed that the Polar Night would be miserable and would be a time that was really hard for people,” Leibowitz said.” But when I talk to people in Norway about it, they really liked the Polar Night.” What she discovered through her research was that since the Polar Night is such a celebrated and looked forward to time of year, peoples’ mindset towards it was inherently positive. She was able to correlate this positive mindset to the lower rates of seasonal mood disorders, and has since conducted studies in other winter climates which produced similar findings. “People who had a positive winter mindset were also more likely to have high life satisfaction, experience more positive emotions, be psychologically flourishing, and sort of pursue the kinds of challenges that lead to personal growth,” Leibowitz said. RISE AND SHINE No, you don’t need to wake up at 5am, unless that makes you happy-then by all means do it! This is actually about waking up and going for a walk to get some light in your eyes. Dr. Andrew Huberman, a neuroscientist and professor at Stanford University, has conducted many studies regarding forward movement and its impact on the brain. He found that when you take a walk and allow sunlight in your eyes your body achieves a state of “optic

flow.” This optic flow helps quiet neural activity in the amygdala, which is the part of the brain that processes anxiety, fear, and threat detection. The activity and sunlight also give you a bolus of cortisol which will help jump start immune, metabolic, and hormonal processes throughout your body which promote healthy and natural function. It is important to kick start these functions earlier in the day so that your body’s clock stays consistent and appropriate. So wake up, layer up, and enjoy that morning sun for 10-20 minutes. Bring a nice cup of coffee or another hot beverage to help keep you warm! MOVE TO THE BEAT Do you dread mundane tasks like doing dishes, laundry, or organizing clutter? You should try turning on your favorite artist or band beforehand. Research has shown that listening to music can help improve mood and promote happiness. This may be due to the fact that music activates our reward and pleasure systems in the brain much like food, drugs, and sex do. Although further research needs to be done, data has shown music has a positive impact on everything from immune function, blood pressure, heart rate, stress levels, and even surgical recovery times! In fact, a 2013 study on fibromyalgia patients found that patients who listened to music once a

day for more than 30 minutes experienced a significant drop in pain and depression symptoms after 4 weeks compared to the control group. Put in headphones or turn the speakers on and turn it up, lupians! CELEBRATE THE SLOW DOWN As Ohioans, we are forced to take advantage of the seemingly brief period of pleasant weather that nature allots us. This usually results in quite a hectic social schedule starting in May and generally extending right through into the holiday season. So chances are, you’ve been quite busy for the last 6 months or so. The good thing that winter naturally provides us is a break! People tend to stay in more and are less willing to want to venture out socially. While it’s never a healthy idea to isolate completely, you can and should take advantage of this time to recharge your social battery and gear up for spring

& summer. Take advantage of the extra “me time” by catching up on the hobbies you love and have likely been neglecting over the past several months. Read some books, try out new recipes in the kitchen, learn a new skill, or just take time to focus on your health and implement healthy habits. Stress management is important for everyone but even more so for lupians. The built in “pause” that Ohio grants us during the winter may be just what your body needs to get back on track!

As always, please remember that you should involve your medical team whenever you are making any lifestyle changes to ensure they are a good fit for you. If you are feeling hopeless or just generally down, please ask for help. Your doctors can help, family or friends can help, and we can help! Please reach out; hope is available.

We can’t avoid winter in Ohio, but we can all learn to adjust to it and still thrive. Lupus warriors are masters at adapting and overcoming. Use some of these tips and implement them this winter to remain positive and on track in your journey. These are just a few examples; there are other ways to stay positive during the cold season. Try to find a good fit for you.

National Mental Health Hotline - (866) 903-3787

If you or someone you know is struggling with their mental health, please reach out to these resources:

Ohio Careline - (800) 720-9616 Suicide and Crisis Lifeline - 988 For Lupus Patient Assistance and Support: Lupus Foundation of America, Greater Ohio Chapter (440) 717-0183

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Winter Word Search

Can you find all of the winter-themed words hidden in the puzzle? Words can be found in any direction (including diagonals) and can overlap each other. Use the word bank below.

Word Bank 1. hockey 5. cozy 9. flurry 13. candycane 17. iceskating

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2. reindeer 6. blizzard 10. jolly 14. holidays 18. jinglebells

3. avalanche 7. snowman 11. flannel 15. sweater 19. hotchocolate

4. zamboni 8. eggnog 12. snowball 16. fireplace 20. ornament

A-Z Fun CHILLY SeasoN Activities Activate your inner artist Bake delicious holiday cookies Camp out in your living room Put out your seasonal decorations Enjoy a warm cup of hot chocolate Find and wear a cozy sweater Go sledding Host a game night with family Invent new holiday traditions Attend a jolly winter-themed event Karaoke with friends Learn a new recipe Make snow angels Offer to help someone Netflix

Exchange presents with your loved ones Quality time with a loved one Read a good book Schedule a dinner date Try a new workout Update your New Years resolution Volunteer for a good cause Watch your favorite winter movie eXplore a new flavor of tea Yoga!

Zone out and relax LIVING WITH LUPUS MAGAZINE

Could You Have Lupus? Lupus is a chronic autoimmune disease that causes inflammation in various parts of the body. The disease can range from mild to life-threatening. Ninety percent of those diagnosed 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. *U 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.

Brain and Nervous System

Eyes, Nose, and Mouth

Have you had a seizure or convulsion?

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

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?

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

Heart and Lungs Have you felt chest pain while taking deep breaths? Have you had a stroke or heart attack?

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

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. Please turn over this page for more information. 28

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

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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?

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Greater Ohio Chapter Programs Available: Let's Talk About It Webinar Series $GG FKDSWHU VSHFLILF SURJUDPV KHUH Living with Lupus Magazine Lupus Night Light Blog My Lupus Living Room Podcast Patient Navigator Program Educational Summits & Classes Support Groups Use this QR code to access program & educational resources. Local State Advocacy

$OWKRXJK WKHUH LV QR FXUH IRU OXSXV HDUO\ GLDJQRVLV DQG SURSHU PHGLFDO WUHDWPHQW FDQ VLJQLILFDQWO\ KHOS WR PDQDJH WKH GLVHDVH ,QFUHDVLQJ QXPEHUV RI UHVHDUFK VWXGLHV DUH XQGHUZD\ WR GHYHORS QHZ DQG LPSURYHG WUHDWPHQWV IRU OXSXV DQG WR ILQG D FXUH The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable, 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. RevJTFE 2000 L Street NW, Suite 410 20036 | Ohio 800.558.0121 202.349.1155 | www.lupus.org | © 2013 Lupus Foundation of America |Lupus Foundation of Washington, AmericaDC Greater Chapter

5IFTF NBUFSJBMT IBWF CFFO NBEF QPTTJCMF UISPVHI B QBSUOFSTIJQ XJUI "TUSB;FOFDB LIVING WITH LUPUS MAGAZINE

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.

Kathy Holmes

Adrienne Rice-Fernandez

Finance Manager Kathy@lupusgreaterohio.org

Lead Project Coordinator Adrienne@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.

Alex Acevedo

Rita O. Piccin, BS, ND, RN

Digital Assets Manager Alex@lupusgreaterohio.org

Lead Patient Navigator /Outreach Coordinator Rita@lupusgreaterohio.org

As the digital assets manager I assist our team with anything in the digital space. After studying business management and marketing at Kent State University, I realized my passion was to help small businesses and other local organizations. I spent 11 years in the pet care industry working primarily in the boarding, grooming, and veterinary spaces. I joined the LFA, GOC team to help our chapter continue to grow and help lupus patients for years to come.

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.

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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.

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!

Mackenna 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.

Bryan Haynes

Beth Coulter

Development Manager Bryan@lupusgreaterohio.org

Administrative Assistant Beth@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!

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.

THANK YOU FOR READING OHIO’S LUPUS MAGAZINE! THIS YEAR WAS VERY ROBUST; THANK YOU FOR JOINING US FOR OUR MANY PROGRAMS AND EVENTS. WE CAN'T WAIT TO SEE YOU IN 2024. HAVE A HAPPY NEW YEAR! 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 Toll-Free: 1 (888) NO-LUPUS

FOLLOW OUR SOCIAL MEDIA @lupusgreaterOH

Living With Lupus - Issue 15

Articles inside

BEATING THE WINTER BLUES

2023 Updates to EULAR Recommendations for Management of Systemic Lupus Erythematosus Begins in Phase 2B Study

RESEARCH NEWS & UPDATES

GET INVOLVED JOIN THE

PATIENT STORY

Holiday Traditions

Favorite Holiday Appetizers BY

RECAP

PATIENT NAVIGATOR CORNER DECEMBER 2023

Suzanne