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Spotlight on… Lynn Giovannelli, Susanne Miller, and Melissa Stephens Sisters, Mothers, and Champions for the ALS community

Lynn Giovannelli, Susanne Miller, And Melissa Stephens Sisters

Susanne, Lynn, and Melissa Stephens spent their formative years in the small town of Hastings, Minnesota, and enjoyed many activities with their close-knit family like travel, cooking, and school events.

“In a family where everyone loves to socialize, it was our middle sister, Lynn, who was always the most adept at making good friends quickly.” shared Melissa. “A room feels more vibrant when Lynn is in it, and those around her can’t help but feel her contagious energy.”

Melissa and Lynn, pictured while in college, don the sweatshirts of their respective schools

The family moved to Ft. Worth, Texas in 1983, with Susanne remaining in Minnesota to attend Gustavus Adolfus College. When it was time for college, Lynn returned to Minnesota, and also went to Gustavus Adolfus. Melissa accepted an offer at Cornell College in Iowa.

Lynn’s love of meeting new people led her to venture out and study abroad. In 1989 while in Vienna, she met Gino Giovannelli, who she would eventually marry.

Lynn and Gino decided to move back to Minnesota and had three sons, Marco, Luca, and Stefano. By then, Susanne was married to her husband, Tom Miller, and was raising her two sons, Ryan and Michael. Their parents returned to the state in 2019.

In 1994, Gino invited his colleague, Evren Eryurek, to the annual family Christmas party. It was there that Evren and Melissa met. The two were married in 1999 and had two sons together, Devrim and Derin. “In a way, they [Lynn and Gino] had a hand in our union,” Melissa remembers.

Susanne Miller, Lynn Giovannelli, and Melissa Stephens

It was a busy time for the three sisters, with their seven sons between them, each approximately one year apart. Lynn pursued her career to become the Director of Advancement at Groves Academy, a job she loved and was an active volunteer for many organizations.

“We were busy with our jobs, raising our families, and spending time together,” Melissa remembers. “I also focused on my artwork. A printmaker at the time, I was finding my way through the art world with internships, exhibitions, and a stint at the Minnesota State Arts Board.”

Both Lynn and Melissa had always found purpose in organizing community events. Much of their spare time had always been spent volunteering for different groups and organizations, including Melissa’s work with the Minneapolis Arts Commission, St. Paul Art Crawl Committee, and Visual Artists Focus Group. The sisters had even served together on a fundraising committee for an annual event hosted by The Courage Center in Minneapolis, a resource facility for people with physical disabilities.

“As Lynn’s younger sister, I learned a lot from her about how to plan a large-scale event,” said Melissa. “Lynn has an easy communication style, sharp memory for details, loads of sales experience, and incredible outreach, so I knew that they were lucky to have her on their team.”

As time passed, the sisters and their families journeyed on with new jobs, growing babies, travel and other adventures. Susanne and Lynn both continued to live and raise their families in Minnesota.

Lynn Giovannelli, with husband, Gino, and sons, Marco, Luca, and Stefano

Melissa moved to Florida in 2005, then to Washington, and finally, to California in Walnut Creek. She focused on her craft as an encaustic painter – a medium that uses a combination of pigments, beeswax and damar resin – while she also worked as an instructor and advocate for the arts.

Melissa at work, giving a live encaustic demonstration, in front of the Sara Lisch Gallery in Berkeley, California.

“The Greek word ‘Enkaustikos,’ means: ‘to heat’” or ‘burn in,’  which is central to the process,” said Melissa. “Color is added to the medium using dry pigments or oil paints, and then the encaustic paint is melted on a hot plate between 180-200 degrees Fahrenheit. After painting each layer, it is essential that the paint be fused with a torch or heat gun, so it will grab onto the surface area beneath it. When the paint cools, an artist may add texture and other media to the painting.”

“My paintings are heartfelt abstractions set to real life experiences, and encaustic paint is the perfect medium because this process has its own story to tell,” added Melissa. “It has all the elements of a good story: luminous layers, malleability and texture; and like a good story, my art is never truly complete until it has been shared. They are my visual response to what is happening in the world, created with an intimacy that leaves room for reflection and introspection.”

The Storm

In 2019, Lynn began to notice a muscle weakness when she would exercise. During yoga and power-walking, her right foot began to drop but Lynn felt things were progressing slowly. “I was a picture of health,” Lynn recalls, “A yoga practitioner of 25 years, group fitness instructor, healthy eater, etc.” Melissa witnessed the changes in Lynn, saying, “Usually sure-footed and strong when exercising, she often found herself stumbling and tripping but could not explain these symptoms.”

Lynn sought professional advice from her doctor, who ruled out many illnesses and diseases. Before seeing the specialists at the Mayo Clinic, she suspected that it was ALS. Lynn officially received her diagnosis on July 27, 2020, at 51 years old.

The Stephens family together around the table

The whole family received the news in disbelief,” shared Melissa. “We were familiar with Stephen Hawking and Lou Gehrig, but we didn’t think that we had anything in common with these men. Lynn is the most health-conscious and exercise-driven person in my family. How ALS found her continues to be a mystery.”

“Strangely, life has come full circle in that Lynn now uses the swimming facilities at The Courage Center to help her combat ALS,” added Melissa.

“ALS affects every aspect of my daily life.” Lynn shares.“ I can no longer drive, I had to stop working, and can no longer cook, which I love, because my hands are not strong. It is a huge loss for me.”

In addition to medical caregivers, Lynn receives blood infusions, massage and acupuncture appointments, swimming sessions, biomarker blood draws, and voice banking, and their older sister, Susanne, helps Lynn sleep with tapping. Even though they are miles apart, Melissa participates via phone and FaceTime to stay in the know about Lynn’s care at the Mayo Clinic.

“Managing my sister’s health is a full-time job that must be constantly honed as more physical detriments evolve,” says Melissa. “Living far away from Lynn challenges my ability to offer assistance. Fortunately, Lynn receives so much care and advocacy from her local chapter of The ALS Association in Minnesota.” 

“While I care about many causes, my main focus is helping and ending this terrible disease,” shares Lynn. “In many cases, people with ALS are told to go home and live their best life with the time they have left, not a very hopeful message. As of today, we are held hostage by the FDA. There is not one cure for this disease, so we need to continue to gain access and help the scientific community to determine biomarkers and combinations of drugs that slow or stop this disease.”

Lynn became an active Chapter volunteer in Minnesota, and recently hosted a ‘Strike Out ALS’ baseball event – a second installment to the successful fundraiser she first hosted last year. She and her husband Gino, who just celebrated 30 years of marriage, and the boys organized the event in parallel with the Minnesota Twins’ Lou Gehrig Day celebration. “The ALS community are the most generous, selfless people I have ever met, and I am learning so much,”  Lynn shared.

Lynn Giovannelli, with Gino, Marco, Luca, Stefano and friends at the 2021 & 2022 Strike Out ALS

“Helplessly watching my sister grow weak is maddening,” says Melissa. “I want to put this disease front and center on people’s minds – if they understand that ANYONE can get ALS, perhaps there will be more urgency for finding cures.”

Hope Lives: Art for ALS

“I felt that developing an art fundraiser was a great way to show Lynn how much I care about her and raise ALS awareness at the same time. I believe that this disease can be cured, and must be cured – it’s simply underfunded. For Lynn and all the people who love her, we need to act now.” 

After securing the San Francisco Women Artists Gallery as the location for her event, Melissa connected with the Golden West Chapter and began collaborating and planning the details. “Their response to my project has been amazing – more than I dreamed of – and I am most appreciative.”

“I wanted to donate to an organization that really understands Lynn’s plight, and advocates on behalf of people with ALS across the country. It is my intention that this fundraiser spotlights ALS.”

The end result is an exhibition entitled, ‘Hope Lives: Art for ALS’ set to run through May ALS Awareness Month. The gallery showcased artwork from 13 different artists in the Bay Area in different mediums, including clay sculpture, collage, mixed media, encaustic, acrylic, and oil paintings. There will also be a collaborative Mandala project for both in-person and virtual attendees. Proceeds and donations will go to benefit the mission of the Golden West Chapter.

The event’s opening reception was well attended by local art lovers and was featured on KRON4 News. Other highlights included a Wine Tasting & Artist Talk, featuring two wines from Lloyd Davis of Sonoma’s Corner 103 wines. Attendees could also participate in a collaborative Mandala art project, both at the gallery and online. There was also an in person and online ALS Awareness and Education Day, which included special guest speakers to educate the public about ALS and the mission of the Golden West Chapter. Participants had an opportunity to learn more about ALS from Viktoriya Irodenko, MD, Professor of Neurology at UCSF and Director of Multidisciplinary ALS Clinic at San Francisco Veterans Affairs Medical Center.

“This exhibition is an effort to raise awareness, which, in turn, will help fund research to more effectively diagnose, treat, manage, and prevent ALS,” adds Stephens. “Art is empowering, so as an artist, I am leaning into my craft, and collaborating with others to educate and build awareness about ALS.”

“The Golden West Chapter is grateful for support from community partners, like Melissa and the San Francisco Women Artists Gallery who fuel our mission,” said Asher Garfinkel, Vice President of Community Outreach. “We are thrilled to have this opportunity, through art, to raise awareness and support for families facing ALS and to advance the search for effective treatments and cures.”

Melissa also plans to continue fighting ALS in support of her sister and other families facing the disease. “I plan on engaging in more ALS fundraising activities for the Golden West Chapter and will help as a participant in the Chapter’s Walk to Defeat ALS. I will do all that I can to help this wonderful organization that serves as my surrogate connection to my sister.”

“I encourage people to give generously to help find cures for ALS,” adds Melissa. “It is a brutal disease that works its way quickly through a person’s body. There needs to be more science to explain this – we need to know more now. Time is a luxury that people with ALS do not have!”

“Although ALS is currently an incurable disease, with very few treatment options, we absolutely need greater access to experimental and promising treatments,” said Lynn. “I am astounded at how many people I meet that do not know anything about ALS. I am encouraged by the amount of research, progress, and momentum currently underway, but it needs to go faster. I believe greater general awareness and advocacy will continue to drive progress. I am eager to participate and so grateful for the support.”

“Let’s do this!”

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