Each and every day, there is an individual or a group of people who contribute time and energy to help someone living with multiple sclerosis or to help the cause to end MS. In this Everyday Hero Stories section, we want to feature stories about these unsung volunteers who help in a variety of ways to fulfill our vision of a world free of multiple sclerosis.
If you have a story to share about your volunteer experience or someone whom you would like to honor, please click on this link to tell us more.
Jan and Ken Mauge are involved in seemingly every event that the National MS Society, Greater Illinois Chapter puts on. They serve as co-facilitators of their local support group; they fundraise for and volunteer at Walk MS and Bike MS; they have done peer visits at a local nursing home, bringing their dog Rusty to provide companionship. So it comes as no surprise that they first came across each other at an event put on by the National MS Society.
“We actually met at the MS Walk in 2004,” says Jan. “Ken has been volunteering with the MS Society since 1991, and I have been active since we met and eventually got married those nine years ago.”
In the thirty years since his diagnosis with MS, Ken has been a constant participant in Society functions. He is somewhat of a GIC journeyman, having taken part in long gone events including the Hike and Bike and the auto show, as well as ongoing ones such as Slugfest. Jan, on the other hand, has found her volunteering niche. As a registered nurse, she is a constant presence at the medical tents that are part of many events.
The Mauges show their dedication to the MS Society through all of the work that they do, but Jan notes that they find their inspiration in separate yet connected ways.
“Ken is inspired to participate in ‘the movement’ because he enjoys meeting new people with MS,” she says. “He wants to help them figure out their disease and learn how to live with it. Myself, I love to see the way that people deal with the disease, and I enjoy the positive attitude that so many people have!”
Phil Berger was diagnosed with multiple sclerosis 34 years ago, and he quickly became involved with the National MS Society, Greater Illinois Chapter. After more than 30 years as a volunteer at Chapter events, a facilitator of the Park Ridge support group, and as an avid and prolific fundraiser, Phil has become very well known among Society staff and clients. However, Phil has not been alone in his endeavors – his family is always right there with him. While they fundraise for and participate in a variety of events throughout the year, they have made an annual family event out of volunteering at Bike MS: Tour de Farms.
“Bike MS is my favorite event,” says Phil’s daughter, Janice Davis. “We meet new people, we run into people we met in previous years, and we get to hang with staff members. It’s a physically exhausting yet emotionally rewarding weekend for all of us, and we look forward to it each and every year!”
Janice is not alone in her love of Bike MS. Her husband, Barry, has volunteered with her for more than ten years. Her sister Jodee Burkart, along with husband Jerry and daughter Jaimee, also claim it as their favorite event, eagerly anticipating that exciting June weekend. More relatives and even non-family members get involved – Sue Welch, a long-time friend of Janice, has been volunteering with her for nearly 15 years. While Janice’s family and friends can list many reasons that they enjoy their volunteer work, Jaimee sums up their primary driving force very aptly.
“I continue to volunteer because I love seeing the smiles on people’s faces, and having them remember you year after year is something special,” says Jaimee. “But really, I would do anything to help out with a great cause that directly affects one of the most important people in my life – my grandpa.”
True to their service-oriented mindsets, Phil’s family and friends have volunteered with many other organizations, including the Leukemia Research Foundation, the Juvenile Diabetes Research Foundation, and local Parent Teacher Associations. If you want to meet any of these dedicated volunteers, you can catch them at the upcoming Walk MS 2014 in Glenview and, of course, at Bike MS 2014 in DeKalb.
Cie Pace first encountered the Greater Illinois Chapter by chance, but a weekend spent volunteering at Bike MS 2005 was enough to get her hooked. At the time, she did not know anyone living with MS, but she was a regular on the volunteer circuit, helping out with the American Brain Tumor Association, the Edward Hines VA, and many other organizations. When Cie’s employer, Xerox Corporation, organized a group to serve as rest stop workers for Bike MS, she gladly joined in. She hasn’t missed a weekend since.
“It was a fantastic experience, and it gave me an overwhelming sense of accomplishment,” she said. “I love giving back and supporting my community, and so I have continued my participation by becoming a rest stop captain for every Tour de Farms weekend since.”
Cie’s commitment to the Society does not stop there. She is currently on the Northwest Suburbs Walk MS committee, serving as the volunteer lead. At work, she has coordinated with co-workers to implement many fundraising events in the workplace, including bake sales, smoothie sales, and the creation and sale of a 300-page cookbook with employees’ favorite recipes. In addition, Cie created the “Hot Dog Combo Lunch Day,” an annual workplace event featuring a picnic lunch and raffle. Raffle prizes are donated by co-workers and community sponsors who Cie contacts herself, many months before the event.
“I wanted to do more, so I approached the Xerox Community Involvement Program leader about fundraising at work,” she said. “They were eager to help make it happen, and we’ve raised a couple thousand dollars over the past few years. This success can be attributed entirely to my fantastic coworkers, who support the Society so much with their money and their time!”
While Cie finds satisfaction in giving her own time and energy as a volunteer, she is happiest when she can teach others to do the same. “Cie’s Family and Friends,” as she calls it, is a group of relatives, friends, and co-workers that volunteer with her at Bike MS every year.
“I have nieces and nephews that started volunteering with me at age four or five, helping with a PB&J assembly line making sandwiches for the bikers,” she said. “Now, they’ve dedicated themselves to more and more service projects – they’re always giving back. My grandma taught me that you have to open your heart to others if you want to see how truly blessed you are. Now, I get to pass along that message.”
Susie Mathews co-owns a pottery art studio in Peoria, manages her own business, and loves to take the lead in her life. She carries the same attitude even when she is dealing with MS. When Susie was diagnosed with MS in 2002, she was afraid of her situation and worried about her medication, which didn’t seem to be working well. But by volunteering with the National MS Society, Susie realized she can empower herself to combat the disease. “Volunteering is a way to take charge of your illness. By being part of the process of finding a cure and developing better medication, I face MS actively rather than sitting back and waiting passively,” she said. “If I can’t get rid of it, I need to lead it. I have to be the boss.”
After starting her volunteering with roles including handing out water and cheerleading in Walk MS events, Susie is also now more involved with another area - the National MS Society’s advocacy effort. She participated in the MS Action Day in Springfield for the past two years, sat down with the senators, met with representatives, and wrote letters to elected officials. Everywhere she goes, Susie tells people about life with MS. “I remember two years ago when I first met one of the congressmen, he had never heard of MS. But after just a five-minute talk, he told me, ‘That sounds great! I want to be on board’,” she said.
Susie believes that everyone can make a difference. “Sometimes people don’t think they can do anything, especially people with illness. But no job is too small, no effort is too little, and no one is too insignificant. If we are willing to take part, we can all be counted.”
Carol Harrison has been volunteering with the Greater Illinois Chapter during summer since 2012. But 50 years ago, long before she started volunteering for the National MS Society, she has already been involved in all kinds of volunteering work. “It is always a great feeling to know that you are doing something to help people. I am willing to do whatever they want me to do, from things as little as stapling envelopes, calling people, to big projects like transcribing videos. I am happy to help with these things so other staff in the organization can focus on even more important things and together we make a greater impact,” said Carol.
She joined the National MS Society because her daughter was diagnosed with MS five years ago. Her daughter is very busy with the job as a clinical psychologist and has little time to get involved with the Society. Therefore, Carol sees the need to connect with the MS community in order to establish a support network and help find the cure on her daughter’s behalf. “One time, I started a conversation with the person I was calling and I could share my story with them about having a daughter with MS. It is crucial for me connect with people who have similar experiences,” she said.
The friendly and warm atmosphere at the Greater Illinois Chapter office is another reason that motivates Carol to volunteer. “People here are always so appreciative of the little things that I do. Those warm hugs and thank-you’s are the perks that draw me to the office every week!”
Carol’s greatest accomplishment is her $4,000 fundraising effort at this year’s Walk MS event. “I don’t even know how this much money came so quickly! I guess sometimes you just need to feel it and do it from your heart. Never expect rewards because they will come by themselves.”
In addition to volunteering, Carol takes care of her husband, two dogs, nine grandchildren, and five children.
Amy Litviak has been volunteering with the National MS Society, Greater Illinois Chapter for six years. She was inspired to volunteer because her father had MS who couldn’t get involved, so Amy wanted to raise awareness about MS and help wherever she could. Amy has been involved as a Walk Ambassador, a photographer and has also helped at MS Slugfest. Not having MS herself is what pushes her to make an impact and help those who have MS.
“If I can do one little thing to make their lives easier, help them cope, give them positivity then I’ve made an amazing impact on not just the MS Community, but on the world,” said Amy.
Her most memorable moment volunteering was being at the walks and feeling the support from everyone because people are so welcoming it makes it all worth it.
Barbara Appelbaum has been involved with the National MS Society as an MS Ambassador and a volunteer. Through sharing her story and the mission of the National MS Society, she has benefited the MS community by spreading the message, increasing awareness and educating people about how far the research has come and how far it can go. In 2011, Barbara started volunteering in 2011 and was the emcee for the Volunteer Recognition Awards ceremony at the Research Symposium.
“We should all find the time to volunteer because we can give so much back to others and it creates power and energy that is unstoppable especially with people who want to get involved and make a difference,” said Barbara.
Being a wellness coach and consultant, living well is something she focuses on. In one of her lectures about overcoming adversity and recognizing that it is a gift, she uses MS as an example. Being diagnosed with MS in June 2006, she hopes that through her speaking, people will see the positivity and strength that can be associated with MS.
“I think that by volunteering it helps people realize they are not alone and that a person can be healthy even though they have a chronic illness,” said Barbara.
Barbara’s goal is to help free the world of MS.
Chuck King has been volunteering with the Greater Illinois Chapter for five years. He volunteers his time taking pictures at many of the Greater Illinois Chapter’s fundraising events such as Bike MS and MS Slugfest. Chuck is very positive at the events and is always willing to help whenever needed.
“After my wife was diagnosed with MS in 1991, it became a learning experience for both of us. I see subtle changes in my wife and I keep thinking there will be a cure soon,” said Chuck. “By going to seminars and MS events I saw all of the other people that are living with MS and decided that I should do my part.”
Chuck’s volunteer work impacts the MS community. By informing people through the pictures he takes, he can show how MS can be defeated, in part, with the help of all volunteers.
“Without the help of volunteers, there would not be the advancements in medicine that there are now,” said Chuck. “The feelings that you get at the end of the day at an MS event cannot be described. I know that I have done my part in helping all people who have MS.”
Denis Yermak has been volunteering with the National MS Society, Greater IL Chapter for 10 years. He volunteered at Walk MS at the finish line to cheer walkers. He also volunteered once at Bike MS: Tour de Farms as a packet pick up assistant and as a greeter at an MS Family Day at a museum event.
“There is a positive energy and feeling at Walk MS with people around all helping in the fight against MS,” said Denis.
Denis has MS and is glad that he is participating by spreading the word about MS and attracting other people to get involved.
“The impact of one person is not that big, but when there are many people working toward the same goal the individual efforts that are added together make the total impact significant,” said Denis.
Denis hopes to continue volunteering in the future.
Talia Weiss started her internship with the National MS Society, Greater Illinois Chapter in January. She is from Bainbridge Island, Washington, but is currently studying Neuroscience on the other side of the country at Dartmouth College in New Hampshire. This term she decided to place herself in between home and school by interning here in Chicago.
“I came into the National MS Society having no idea what to expect, but I was met by such enthusiastic, passionate, intelligent, and genuine people here at the Society that I instantly felt welcomed and comfortable,” said Talia. “This is truly an organization that cares deeply about their cause, and you can sense this feeling as soon as you walk in the door.”
Talia is working on a variety of projects in the Marketing and Community Engagement Department. One of the projects she is working on is to help strengthen the chapter’s MS Ambassador Program, where volunteers who have a connection to MS are trained to go out into the community and speak about MS and the Society in order to spread awareness.
She is also working on another project that focuses on promoting local research. Last year the Greater IL Chapter awarded grants funded by the Illinois State Lottery to 8 local researchers to fund novel, innovative MS research projects. Talia is interviewing these researchers about their current projects to close the gap between fundraising and research.
“Every day you know that you and the people around you are helping to improve the lives of individuals throughout the state, and I think there is hardly anything more important or rewarding,” said Talia.
Fran Abramovitz began volunteering with the National MS Society, Greater IL Chapter about a year ago. Her mother was diagnosed with MS 10 years ago and that is when her family first became familiar with the National MS Society and started participating in Walk MS. Then five years ago Fran was diagnosed with MS.
“After I was diagnosed I found comfort and relief on the National MS Society website and realized that I was not alone,” said Fran. “I also realized that one day when I was able, that I wanted to be part of the National MS Society.”
In the past year Fran volunteered at two different health fairs, the Research Symposium in 2012, MS Half Court Classic 2013 and is now an office volunteer.
“I volunteer because the National MS Society personally means so much to me,” said Fran. “My goal is to spread awareness about MS; whether it’s to explain what MS is, or to share with other people with MS that they're not alone in this battle,” said Fran.
To her volunteering with the National MS Society has been an incredibly rewarding experience because it makes her feel great to know that she can make a difference.
“Everyone and anyone can make a difference,” said Fran.