M.A.D. about MS – Stuart Schlossman
This article is part of an ongoing series about people who are Making A Difference (MAD) about MS. Visit Ashli Hopson’s interview.
Stuart’s Support Mission
Stuart Schlossman is the founder and President of MS Views and News, a clearinghouse for multiple sclerosis information and programs. His website is jammed full of links and videos, including many of the blogs you have seen here on MultipleSclerosis.net. Anyone who has been in Stuart’s presence knows it’s hard to get him to stop and do just one thing, so it was my good fortune he took a lengthy pause in his day to talk with me about his advocacy work for the MS community. I wanted to know more on why he is M.A.D. about MS. [Image: Stuart Schlossman, MS Views and News]
Can you tell me some about your history with MS and what makes you work so hard for MS Views and News?
Stuart: In 1980 I moved from New York to Miami for the family business and began an export business to Latin America for industrial sewing machine supplies. I was doing a lot of travel and found my trips were shorter and shorter due to my not feeling well. I thought it was too much travel. Or maybe drinking too much bad water, or atmospheric conditions or something else. I even brought my own water and food with me on my trips because I was sure something was poisoning me.
How did you find out you have MS?
Stuart: I was in South America and I came back, returning sooner than planned because the right side of my body was not working. My primary doctor said – Stuart, the month of December is a slow month, take off some time and see what that does. I wasn’t interested in waiting and I contacted the local hospital’s chief neurologist. Right away he had something in mind. The MRI results came back with results of an illness I knew nothing about – Multiple Sclerosis.
What happened next?
Stuart: I asked what are we going to do? His answer was we were going to do nothing. I said nothing? He said the medicines for MS have major side effects and convinced me that I didn’t want to do that – he thought I needed to be using a walker or wheelchair and be worse before starting a medication. But I didn’t want to get worse. I got on the phone with the MS Foundation and asked for referrals- I saw another doctor and after four hours of testing, he gave me a box of medication, told me I had MS and I needed to take it to not get worse. That’s what I wanted to hear. I wanted to know I had a chance to not get worse.
Stuart went on to explain the number of disease modifying drugs he has tried, including combinations of two injections. After having reactions and then an insurance change with coverage, he had a major reaction to one of the drugs.
Stuart: I took a medication vacation and I had a major exacerbation. I got back on medication too late. I refused steroids and I shouldn’t have. The remaining option was Tysabri but my doctor didn’t like it and refused to put me on it. A few months later he retired and the new doctor put me on Tysabri. Over five years ago I went on Tysabri and I became a poster child for the drug manufacturer and a patient advocate spokesperson – it enabled me to do things and learn to write grants and create these educational programs. Without this drug I was barely walking, I was barely thinking. But that’s what’s good for me – it doesn’t work for everybody and I would never want to say that is the right way to go for everyone.
So you’re saying that while you were a patient advocate for Tysabri you were learning new skills and making important contacts?
Stuart: Yes, I had to tell you my history so you understand how I got to here. I started writing Stu’s Views and MS News shortly after my diagnosis. Then in 2008, I incorporated MS Views and News, and in 2009 we were recognized as a non-profit organization.
Why do you dedicate so much of your time to MS Views and News?
Stuart: I like to volunteer – I did a tremendous amount of work with National MS Society and chaired 5 walk sites in South Florida, some years I chaired two. Not only did I do the walks, I also worked with them on an MS Health Expo, which is similar to what we do now. When I wanted to go further and provide education programs, I was told no. Back then, some pharmaceutical companies did their own programs, but not like they do now.
If the pharmaceutical companies are doing their own programs, what makes the ones from MS Views and News different?
Stuart: We do multiple speaker programs – and it provides a complete learning experience. There is a need to provide a program that covers A to Z of multiple sclerosis and does not highlight a particular drug. We select topics that the programs focus on. Our typical program is 2.5 hours and we provide a tremendous amount of information. When you get out of the big cities you find there is a great need for people to learn more. Some people don’t know about prescription cost assistance. Some people don’t even know there are oral MS drugs available now.
You began in Florida but now you are holding programs in a lot of different places.
Stuart: As of this month we have held programs in 8 different states and our newsletter has subscribers from over 90 different countries.
Can you talk a bit about what someone might expect from a MS Views and News program?
Stuart: We try to get different doctors and nurses to speak at our programs. I give them the topic for the program and they speak about those topics. It might be on the current medication landscape, invisible symptoms or ways to remain compliant with treatment. We might also talk about managing symptoms of MS. We never present about just one specific drug. If you can’t attend a program in person, you can sometimes watch this program online at MS Views and News learning channel on YouTube as we often video-record our programs but not all of our events. We video record over 90% of what we do at the programs. Even if you were there in person, you can watch it again in case you forgot something. It’s also a good way to share information with family and friends.
How would someone like me go about getting one of your programs in my area?
Stuart: People can contact us through MS Views and News to ask about programs in their area or to propose a program. We plan our programs about six months in advance, because we have to find a place to host it and the dollars to support it. Pharmaceutical companies help with the costs because they really want people to learn more about MS. We would start with the topics and work from there to build the program for the area. We have very good turnouts.
(You can check the list of programs currently scheduled on the home page of MS Views and News.)
You are obviously MAD about MS – what is it that pushes you to Make A Difference?
Stuart: We are a true patient advocacy organization. Of the ten people on our board, 8 of them have MS. We each understand and know what the MS patient might want. We are in tune because we also live with MS.
But what is it that keeps Stuart Schlossman going?
Stuart: Once upon a time, I was a salesperson. Now I am happy to feel like an educator and more delighted to know that there is a person like me (and yes there are many others too), who want to help people to learn and not disappear simply because they were diagnosed with an illness. People need not become invisible, if they can learn what can or might, affect them. Doing this is my therapy – I’m not sitting on my a$$ wondering how my MS is going to get and what will happen to me next – I don’t have time for that. I am too busy thinking about what others with MS might need. Many people might be diagnosed and become couch potatoes, just waiting for the worst to happen, but that’s not how I want to be. Mainly I want to be able to give support especially to people who are newly diagnosed – what I was not able to get for myself when I was first diagnosed. I want to be able to provide for others.
Thanks, Stuart, for all you do to support people with MS.
M.A.D. about MS is our series on people in the community Making A Difference.