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How an MS Advocate Finds Inspiration Through Giving Back to the Community

By HERWriter
 
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Multiple Sclerosis  related image Photo Curtesy of Stuart Schlossman

Stuart Schlossman has an impressive resume – he is the founder and president of MS Views and News (MSVN), a nonprofit 501(c)(3) organization created to provide information about multiple sclerosis (MS) to people online and through in-person educational seminars.

Before starting MS Views and News, Stuart donated much of his time to the National Multiple Sclerosis Society, chairing walk sites for five years and fundraising. He also helped to spearhead various educational programs and co-facilitated a self-help support group.

In speaking with him, even for a short time, you can see Stuart is the kind of person who tries to find answers to the questions people with MS most often ask. A passionate man, Stuart has worked for many years to help make MS information more easily accessible and sharable with the community.

Stuart spoke with us recently about his motivation, what he is grateful for and his journey to becoming the motivated MS advocate he is today.

EmpowHER: Take us through the beginning of MS Views and News.

Stuart: When I was first diagnosed with MS in 1998, I went online to learn everything I could about the disease. I was considered Internet savvy in those days.

I started sending emails to a few people in my MS support group about experiences, symptoms and available medications. After a while, people from other support groups started reaching out to ask me about the information I was including in those emails.

As I continued receiving requests for information, I decided to put it all in one place that could be easily shared. I called it “Stu’s Views and MS News,” and it soon became a daily newsletter. The daily newsletter then became a weekly newsletter, then a bi-monthly newsletter. In 2008, I officially launched it as MS Views and News.

EmpowHER: What inspires you to keep the momentum going?

Stuart: Many years ago, there were limited educational opportunities for the MS community. In my role with the National Multiple Sclerosis Society, I regularly received questions from people about how they could learn more about MS. This made me want to do more for those living with MS.

Today, there is still a tremendous opportunity to educate people with MS and their support partners. What I’ve heard most is that it’s not always easy to get in-depth and accurate information. This is what inspires me to keep building MS Views and News and work to address these needs.

As the newsletter continued to grow, members of my team suggested we evolve MS Views and News into an organization and start offering educational programs ourselves. The idea was to empower people with MS and their caregivers by providing in-depth MS education. Several people stepped up to help, including an attorney whose wife has MS, and my cousin, who is an accountant.

MS Views and News officially became a nonprofit in 2009, and we held our first educational program – a Spanish-language program – in 2010. We expected 80 people to turn out for the event and instead 140 showed up. I felt great. People felt great!

Today, the newsletter that began with me sending emails to 20 people has grown to more than 50,000 people accessing our information through emails and social media. Additionally, we have 53 programs running in 23 states, providing in-person support to complement our online information.

EmpowHER: Wow, running fifty-three programs is impressive!

Stuart: The more people I see educated, engaged and empowered by our programs, the more I want to do another one. I feel inspired every time someone asks when we are coming back to their area or when physicians tell me that they love speaking at our programs.

EmpowHER: Where do you get your energy?

Stuart: I think I get my energy to from everyone around me.

At the beginning, when I was first diagnosed, I would ask, “why me?”. Then I realized I was the “chosen one,” being given a unique opportunity to help to spread messages and information about living with MS.

My personal motto is that I had to teach MS to live with me. If it doesn’t like me, it can get out. I guess you can say, we eventually learned to coexist.

EmpowHER: For those who are interested in learning more about your programs, where should they start?

Stuart: Start at our website, which was specifically designed for someone with MS. For example, we learned that our “up and down” vertical format is better for people with MS who may not be as good with scrolling to find information. You can register at our website to receive our bi-monthly e-newsletter and to be notified about upcoming MS educational programs.

We also recommend people visit other sites including the National Multiple Sclerosis Society and the Multiple Sclerosis Foundation, as well as GatherMS.com, an online platform that provides links to existing resources and services like MS Views & News.

EmpowHER: Have there been any stories that you have found touching in recent months?

Stuart: As a dog person, having Xavier, a “companion” dog, at one of our programs really impacted me because he knows how to put a smile on the faces of people who may have forgotten how to smile. Companion and service dogs often help people in a way I can only describe as “magical.”

Another thing that impacts me is seeing people in various disease states who are grateful for our programs. Our programs give them a place to learn, but also to get out of their homes and talk with others who do not see them as disabled. This is truly touching.

EmpowHER: During the fall giving season, what are you grateful for?

Stuart: We are a grassroots organization that is dependent on our volunteers. I thank them for lending their time to help our organization grow.

I am also thankful for the people and companies that have worked so hard to develop medications that help the MS community. There is not one treatment that works for everyone, so it is important to have as many options.

EmpowHER: You seem like a fighter.

Stuart: Funny you say that. At MS Views and News, we try to encourage people with MS to learn how to be aggressive in their fight against the disease and to find ways to hold onto their independence. Living with MS, I think you have to be a bear. I remember years ago, when I facilitated an independent support group, a portion of the program displayed a grizzly bear, with a snarling, growling look. This image, representing the need to be tough and fight, has stuck with me.

Sponsored by: Genentech

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M.A.D. about MS – Stuart Schlossman. Laura Kolaczkowski. MS Views and News: Retrieved September 8, 2017. https://multiplesclerosis.net/living-with-ms/m-a-d-about-ms-stuart-schlossman/

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