It’s Time for the Younger Generation to Raise MS Awareness
I still want to contribute my voice to the MS community, but I believe younger voices will move the public to act.

I’ve been doing what I can to pitch in for those of us with multiple sclerosis (MS) for a long time now, and I have no intention to stop speaking out for myself and others in the community. But what I need from the MS movement may not be what those coming behind me need — or will need in the future.
When I was diagnosed, in 2001, MS was considered a “prime of life” disease. What they meant by “prime” was that most people found out they had the disease between ages 30 and 50. I myself was 35 at the time of my diagnosis.
Now, with diagnostics improving and medical professionals (and the general public) more aware of early symptoms of the disease, more people are being diagnosed with MS in their twenties.
In other words, MS is becoming a young person’s disease.
MS Representation Needs to Change With the Times
As March is MS Awareness Month in the USA (and this week is MS Awareness Week there) and World MS Day is not too far away, I am reevaluating my place and that of my ilk as the MS movement progresses. Even for those newly diagnosed in their “prime” years, needs are different, thus representation should be reflective.
I look back at both my advocacy work and services I have used from a number of patient advocacy organizations. I see what worked for me. I see how things changed. I see what doesn’t work for me any longer but does work for the thousands joining our ranks each week.
My voice no longer speaks well on behalf of that cohort of people living with MS.
The world has changed since I was diagnosed, no doubt. But the way I look at that world, as well as the eyes with which I see it, has changed as well. But it’s not just me …
Younger MS Advocates Motivate Donors
When people donate to a cause — when they put their personal and professional weight behind a movement — they want to feel like they are making a difference. When a younger person with the potential of their life ahead of them speaks about how the disease has changed them and what effect it may have on their future, there is a visceral reaction. We all want to help alter that life for the better.
My experience has shown me that a late-middle-aged man isn’t the face to best associate with a young person’s disease, particularly when 70 percent of those who are diagnosed are women.
Don’t get me wrong; I’m good at doing my part when called upon, and I enjoy lending a hand, but when it comes to raising awareness, I am not the person from whom people should be hearing. That’s a job for others now.
Supporting the MS Community Is Something I Can Still Do
Perhaps my niche in the MS world has shifted to being a part of the conversation within the community — not one to tell the story to the greater population (the healthy ones with the money and resources to get better treatments and a cure over the line).
So “awareness” isn’t where I see my voice and experience being of best use. I see that my efforts (and those of many of us who have been here for more than a little while) will be best employed as a voice to the MS community, not for people living with MS.
We all have something to give to the cause. I encourage those who have the ability and inclination to take up the ball and run with it. This is your time. I think I’ve got it as far down the field as these legs can carry it.
Wishing you and your family the best of health.
Cheers,
Trevis
Important: The views and opinions expressed in this article are those of the author and not Everyday Health.

Trevis Gleason
Author
Trevis L. Gleason is an award-winning chef, writer, consultant, and instructor who was diagnosed with secondary progressive multiple sclerosis in 2001. He is an active volunteer and ambassador for the National Multiple Sclerosis Society and speaks to groups, both large and small, about living life fully with or without a chronic illness. He writes for a number of MS organizations, like The Multiple Sclerosis Society of Ireland, and has been published in The Irish Times, Irish Examiner, Irish Independent, The Lancet, and The New England Journal of Medicine.
His memoir, Chef Interrupted, won the Prestige Award of the International Jury at the Gourmand International World Cookbook Awards, and his book, Dingle Dinners, represented Ireland in the 2018 World Cookbook Awards. Apart from being an ambassador MS Ireland and the Blas na hÉireann Irish Food Awards, Gleason is a former U.S. Coast Guard navigator. Gleason lives in Seattle, Washington and County Kerry, Ireland with his wife, Caryn, and their two wheaten terriers, Sadie and Maggie.