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When Susan Rusinko met Annette Simiele at church in 1998, she knew little about multiple sclerosis, a chronic autoimmune disease that had never affected her life. As the two women spoke, Rusinko was impressed by Simiele’s dedication to her newly independent organization, Multiple Sclerosis Resources of Central New York.

A few months later, Rusinko learned that a friend had been diagnosed with MS and reached out to Simiele for more information about the disease. Simiele encouraged Ruskino to participate in MS Resources of CNY’s annual walk to raise awareness for MS.

Shortly after, Rusinko was diagnosed with MS and returned to Simiele, this time seeking help for herself.

Every winter, MS Resources of CNY hosts a walk in Destiny Mall to fundraise and show solidarity with those battling the disease. This year marks the 27th year of the tradition and will be held on Sunday.

Since its founding, the Syracuse-based organization has helped over 1,400 MS patients find treatment, provided transportation and assistive devices, and coordinated retreats and events to build community among patients across the region.

“You can go to a doctor, and the doctor will say, ‘Look at you, … you might as well get a wheelchair,’ and you’re scared to death,” Rusinko said. “Then you talk to Jess and Annette and they try to give you all the options.”

Simiele, the organization’s associate director, and her only colleague, Executive Director Jessa Goss, have worked together in this effort for 30 years. The duo began collaborating in the mid-90s when MS Resources was part of a National Society, but soon broke off from the larger organization to pursue a more focused effort in central New York – where MS rates are nearly double the national averages.

While the cause of the unusually high number of MS diagnoses remains unclear, Simiele said there are theories about hereditary predisposition and claims that environmental factors may increase the likelihood of developing the disease. With more diagnoses of increasingly younger patients, Simiele said MS research efforts have grown significantly since the turn of the century.

Rose Soto, a nurse practitioner at CNY Neurological Consulting, said the disease targets the myelin sheath, which protects neurons in the spinal cord and brain. As MS eats away at this protective layer, signals traveling through the nervous system are interrupted, leading to fatigue, memory loss, mood changes, vision impairment and mobility issues.

There’s no single method for diagnosing MS, Soto said. Practitioners rely on medical history, magnetic resonance imaging and in some cases spinal fluid analysis. She said she encourages any person experiencing symptoms of the disease to be examined, as early detection makes the condition more treatable.

Patients can experience varying severities of these symptoms and often require walkers or wheelchairs, renovations to their homes and new methods of travel, Soto said.

“The best thing to do is keep someone walking, keep somebody active, keep their vision intact,” Simiele said. “Because (MS) does affect the brain, the spinal column and the optic nerve, you want to get on something that can hold the disease at bay, stop it from progressing.”

Courtesy of Multiple Sclerosis Resources of Central New York Inc.

Being diagnosed with a relatively unknown disease can feel very isolating, Annette Simiele said. MS Resources of CNY works to help patients find treatment while also building community among their clients.

When Simiele first entered the field, MS had recently received its first effective treatment, interferon beta-1b, a disease-modifying injection therapy that slows the spread of myelin damage and reduces relapses. While there is still no cure, multiple treatments now exist to limit the disease’s impacts.

Rusinko said she was frightened when she received her diagnosis. In April 2000, she was on a family vacation at Disney World when she noticed the sun’s heat was intolerable to her but none of her family members. When her temperature sensitivity continued, she decided it was time to talk to a doctor.

As someone diagnosed with an incurable ailment, she recalled feeling isolated and anxious in the first months. After some encouragement from Siemele, Rusinko agreed to attend an all-women’s retreat hosted by MS Resources of CNY — a decision she said soon changed her life.

Joining a cohort of fellow MS patients, Rusinko built a strong community, unified not only by their love of the Beatles and karaoke, but also a commitment to actively combat the disease together. The organization now hosts the retreat annually, choosing a specific theme for the weekend and incorporating it into games, speaker events and shared meals.

Strong relationships and brain exercises — such as puzzles and strategy games — can help strengthen the body’s fight against MS, which Simiele intentionally incorporates into the group’s annual retreats.

“We see each other once a year at the retreat and have a wonderful time, and we’re like, ‘Geez, I wish we could get together more,’” Rusinko said. “I’m telling you, those girls went above and beyond and out of their way and we started meeting for lunch.”

What Rusinko once considered a “life sentence” has blossomed into a strong community and lifelong friendships. With friends by her side and the strong treatment that MS Resources of CNY helped find, Rusinko hasn’t felt isolated by her disease in decades.

Simiele said she expects around 250 participants to march on Sunday. With the assistance of a cane and surrounded by a team of supporters, Rusinko plans to march three miles.

“Through having MS, people have said, ‘Oh, it’s awful,’” she said. “But you know what, if I didn’t have MS, I would not have met some of the most wonderful people who have enriched my life.”

Published on February 26, 2025 at 9:23 pm

Contact Duncan: digreen@syr.edu