Longtime volunteer and Walk MS participant, Deanne Basofin was diagnosed with MS in 2001 after several years of displaying symptoms. Deanne, who has walked in every Walk MS event since 2004, said, “I guess I got involved because I’m someone who can’t sit on the sidelines, because I have so much hope that our futures with MS have never been brighter. Thanks to the millions of dollars the MS Society has invested in research, there are some exciting new treatments on the horizon and, in the next few years, I believe the face of MS will be changing.”
Deanne is currently the facilitator of the Evanston support group and has truly enjoyed her experience leading the group. She said, “I have watched people who feel so guarded and afraid, come into the room and are greeted by people just like them. I can literally sense their sigh of relief when they meet others facing the same challenges. I continue to be impressed by their strength and coping skills and I feel together we can fight this disease.”
Mary Armstrong is a Senior Representative for Home Delivery Incontinence Supplies (HDIS), the nation's leading supply company for individuals struggling with loss of bladder control. Here, she speaks about her work and her connection with the National MS Society, Greater Illinois Chapter:
I have worked at HDIS for 25 years. When I started at HDIS, I barely knew what incontinence was. I had no idea that so many people of all ages suffer from incontinence, and how drastically it affects their daily lives.
One of my co-workers developed MS in 1995, and I learned from her how MS impacts the lives of the patient and those around them. About 9 years ago, I moved to a group that works with the different MS Chapters. I talk with many MS clients every week, and I know that they use a wide variety of products to manage their incontinence needs. It’s very rewarding to be able to help someone find a product that works well for them so they can confidently feel protected.
I also talk with many MS case managers and am constantly impressed at how caring and concerned they are for their clients. They know that we can offer suggestions and send samples to help find the correct product to meet their client’s needs.
Some of our MS clients have been with us for so many years that it feels like a conversation with a friend every time they call. I enjoy that personal contact and the feeling that what I do each day makes a difference for my clients. Part of our HDIS Mission statement says “We believe in treating our customers with the same compassion and caring that we offer to members of our own families.” I feel strongly, after 25 years, that we really do take this to heart when we are helping out our clients and the people who work with them.
Diane Bowen was diagnosed with MS in 1983 and regularly received information and mailings from the National MS Society about upcoming events. However, it wasn’t until 2005 when Diane heard the Society was looking for Peer Support Volunteers that she began her involvement with the Greater Illinois Chapter. The Peer Support programs connect individuals with volunteers living with MS who have “been there” via a telephone or email conversation. “I decided to give it a try since this was something I didn’t have when I was diagnosed. I’m so glad I did”, said Diane.
After Diane retired, she started volunteering weekly with the Programs department helping with various projects. As an MS Ambassador and a member of the Volunteer Development Committee Diane is more involved than she ever dreamed to be.
Throughout Diane’s nine years volunteering with the Greater Illinois Chapter, her most memorable experience was while giving Peer Support. “I spoke to a man who was newly diagnosed and was terribly depressed. I could hear it in his voice. I shared my experiences with him, and we talked about the symptoms of depression and how depression was also a symptom of MS. I urged him to talk to his doctor. The next time I talked to him he was like a different man. He was on medication and sounded great. I just thought, Wow, this is why I’m a doing peer support!” said Diane.
If you would like to connect with other peers living with MS, or would like to become a peer volunteers through the MS Friends program, please contact 1.800.344.4867.
Diagnosed with MS in 2008, Patricia Kroll was reluctant at first to seek support from the National MS Society. However, after some time passed she decided to call to find resources to learn more about her MS and was connected with a peer support volunteer. “I was ambivalent at first but found her interest, knowledge, and sincerity so great that we continued talking for over a year and remain in contact to this day”, Patricia said. Patricia’s connection in the Greater IL Chapter launched from there with her involvement in numerous volunteer opportunities.
Patricia described her time volunteering with the Chapter as a timeline, “I was fortunate enough to be involved in the peer support program then asked to assist with the Health Expo at the annual Research Symposium and finally the Nursing Home Presentation Program. This involvement has certainly extended to allow me to provide support to a large number of people in a greater number of ways.”
When asked what a world free of MS looks like, Patricia responded, “that the physical, emotional, and cognitive impacts of the disease would no longer so negatively impact the lives of those with the disease and their families.” With the help and support from people like Patricia, we are that much closer to a world free of MS!
Louise Gutowski of Antioch was diagnosed with MS in 1976. Several years later, in 1989, she became a member of the Antioch self-help group. Upon joining this self-help group Louise discovered the National MS Society and the variety of programs and services available to people living with MS.
“Being part of a group and sharing our views and ideas with people with MS and their families is what drew me to the self-help group and why I decided to stay involved” said Louise.
After being a part of the group for several years, Louise began co-facilitating and has served in her role for the past 19 years. She has enjoyed keeping up with the research progress that has been made since her diagnosis and sharing that information with her group. Louise recently announced she will be moving to Florida and we thank her for her many years of leading a self-help group!
To find a self-help group in your area call our Information Resource Center at 1.800.344.4867.
Declan Loftus first became involved with the National MS Society, Greater Illinois Chapter in 2005 when he participated in Walk MS with his family team, the MSKeteers. Through their participation at Walk MS, Declan and his parents became aware of the variety of programs and services offered by the Greater Illinois Chapter.
In 2010, Declan went to the James Cantalupo MS Youth Camp for the first time and enjoyed that experience immensely.
“There is no doubt in my mind that MS Youth Camp is the most fun I have ever had,” said Declan. “Not only do we participate in classic camp activities, such as target sports and rock climbing, but we create this truly everlasting connection. Just being with people who share the same struggles or maybe worse really makes the camp truly unique.”
After completing his fifth and final summer as a camper at MS Youth Camp, Declan had some time to reflect on his experiences and what they meant to him.
“My most memorable experience with the Chapter had to be my last year of MS Youth Camp,” said Declan. “I tried things that I would have never thought of trying just so I could have that experience and really make the most of my final days as a camper. This last camp experience really proved to me and to my age group that we really are like family. We all look out for each other like not many others can. I can safely say that these people that I have met at MS Youth Camp have become some of the best friends I could ever ask for.”