Against the Odds

AGAINST THE ODDS Stronger Together

By Drew Gieseke Photos courtesy of MS Bright Spots of Hope

Thirteen years ago, Jane Horvath was diagnosed with multiple sclerosis, the chronic disease of the central nervous system that may cause speech defects, loss of muscle coordination and other effects. Her journey was filled with denial, anger and frustration. She even isolated herself despite the support of her family.

In 2016, Horvath attended an event that she thought would just be another seminar populated with vendors and pharmaceutical companies. Instead, she was treated to lunch and a speaker session led by Michell Keating, the president and CEO of MS Bright Spots of Hope.

“That afternoon changed my life,” Horvath reflects. “I learned that the key to living fully with MS was to exercise and to embrace challenging mental activities. I had found a support system.”

That’s exactly what MS Bright Spots of Hope is designed to do: build up people living with MS.

Keating, a registered nurse who was diagnosed with relapsing remitting MS in 1981, established the St. Louis-based nonprofit in 2016 to develop and provide engaging programming for people with MS. It aims to educate, empower, spark creativity and enhance wellness not only for these individuals but also for the broader community. Programs often include positive MS role models like Horvath, which helps strengthen the organization’s support network.

According to the National Institute of Neurological Disorders and Stroke, multiple sclerosis is an unpredictable disease that’s impact can range “from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted.”

People typically experience their first symptoms – often blurred or double vision, even blindness in one eye – between the ages of 20 and 40. Additionally, most MS patients experience muscle weakness and difficulty with coordination and balance. There is no cure for MS, though treatments are available to help patients manage their symptoms. Still, living with the disease can be a struggle.

“A person with MS may feel alone,” Horvath says. “Depression is a common symptom. Coping with MS involves more than education and treatment of the disease and its symptoms. MS Bright Spots of Hope helps those with MS and their care partners to develop a strong support network with positive MS role models, provides fulfilling leisure activities and fosters a hopeful outlook that enhances living with MS.”

Horvath now dedicates herself to supporting the organization that’s given her so much. In addition to participating in community-building events like monthly Fitness Friend exercise sessions, she works on committees, raises funds, makes calls and volunteers when needed.

MS Bright Spots of Hope provides activities to anyone with MS and the individual’s care partner for free, with some travel-related events requiring minimal fees to cover costs. Programming includes adaptive cycling trips, yoga classes, dance classes and educational discussions about MS. The nonprofit currently serves approximately 300 people.

“A robust community for people with MS reduces isolation and promotes health and wellbeing,” Horvath notes. “As a community, we take care of each other. We share information, talk about things that the doctors don’t have time for. I learn something every time I meet with the group. We are educated. We are creative, we have fun – and it is all about the group.”