Last year at MS Focus on Fashion, Jennifer and I watched as the Multiple Sclerosis Foundation presented its first Sean Giblin Memorial Award.
We were touched as we learned about Sean, a young man who was diagnosed with Multiple Sclerosis as a teen. He eventually turned his experiences with the disease into a way to connect with and support others living with MS.
That evening also gave us time to talk with Sean’s mom, Debra Giblin-Davis, and to learn more about her son, his life, and his commitment to the Foundation.
We left that evening with an appreciation for the person whose name was attached to this award.
Never did we imagine that a year later, the Foundation would choose us to receive it.
This November, we will return to MS Focus on Fashion to receive the Sean Giblin Memorial Award. We are grateful, humbled, and, truthfully, still a little speechless.
Because knowing something about Sean makes this recognition mean so much more.
Finding his place
Sean was an athlete growing up. He loved soccer, swimming, biking, playing drums, and being outdoors.
At 16, after failing the eye exam for his driver’s license and experiencing other unexplained symptoms, Sean was diagnosed with MS.
His disease was aggressive. Over time, he stopped driving, began using a scooter, experienced increasing spasms, and lost the ability to write. During his senior year of college, where he was studying social work, he had to leave school.
“I felt hopeless,” Sean wrote in a 2018 MS Focus essay. “I felt like MS was defeating me.”
But that wasn’t the end of Sean’s story.
At his mom’s suggestion, Sean contacted the Multiple Sclerosis Foundation and discovered its We Care; We Call program. The concept was simple but powerful: people living with MS called others living with the disease to check in, listen, and talk about whatever was on their minds.
Sean volunteered, and he found his place.
He eventually joined the Foundation staff as a support services coordinator, combining what he had learned studying social work with something no textbook could teach him: what it actually felt like to live with MS.
Sean had a wonderfully direct way of explaining this.
“When it comes to MS, if you haven’t got it, you don’t get it,” he often told callers.
Sean got it.
He understood the frustrations, changes, uncertainties, and losses that can come with this disease. Rather than allowing those experiences to define what he could no longer do, he used them to connect with people who needed someone who understood.
“I feel blessed that I can connect in a real way because I really do understand what people with MS are going through,” Sean wrote. “I feel that I make a positive contribution every day that I can work there.”
A legacy of listening
Sean died in December 2023 at age 33.
There is plenty to say about everything MS changed in his life, but that isn’t what stands out to us about Sean.
What stands out is what he did with the life he had.
His obituary described him as a compassionate and caring listener. That feels especially fitting for someone who spent so much of his time making sure other people living with MS felt heard.
The people who knew Sean remember that same warmth.
“Sean was like sunshine, just an endless source of warmth,” said Kasey Minnis, executive director of the Multiple Sclerosis Foundation. “He greeted everyone with a smile, and his positivity was never forced. He was the most authentically kind, funny, upbeat person.”
Deb Forman, educational programs coordinator for the Foundation, remembers Sean as one of her “very favorite people.”
“He was thoughtful, funny, affectionate, a great listener, and always wore a smile,” she told us. “Sean and I shared something in common: our love of people.”
That love of people extended well beyond Sean’s work on the phone. He participated in clinical trials and MS research and spoke publicly about issues including medical marijuana, MS research, and pediatric MS.
Kasey described him as a “tireless advocate” whose approach remained positive and cooperative.
That spirit also helps explain why the Foundation created an award bearing Sean’s name.
“We wanted to honor his legacy by recognizing advocates who brought that same spirit of hope and light to their work on behalf of the MS community,” Kasey said.
For Deb, the decision was even simpler. Because of Sean’s uniqueness and the joy he brought to the Foundation staff and people living with MS, she said creating an award in his memory was a “no-brainer.”
Sean wasn’t pretending MS was easy. He wasn’t claiming a positive attitude could make the disease disappear. In fact, he was remarkably candid about how difficult living with MS could be.
Still, he kept finding reasons to connect, contribute, laugh, advocate, and move forward.
“Today, I know that life is not over; life is yet to begin,” Sean wrote.
Understanding the honor
We never had the opportunity to know Sean personally. But we were fortunate to learn about him, meet his mom, and hear from people who knew firsthand the impact he made on the Multiple Sclerosis Foundation and the people it serves.
Perhaps that’s why receiving an award bearing his name feels so humbling.
Our experiences with MS aren’t Sean’s experiences. But we recognize something in the way he approached life with this disease: the belief that our lived experiences can become something meaningful when we use them to connect with and support others.
That’s something we try to do through A Couple Takes on MS, our advocacy, writing, podcast, presentations, and conversations throughout the MS community. We share our experiences not because we have MS figured out.
We share because maybe something we’ve experienced can help somebody else feel understood, encouraged, or a little less alone.
Sean understood the power of that connection.
We were honored to watch his legacy be recognized at MS Focus on Fashion last year. This year, we are humbled that the Multiple Sclerosis Foundation has chosen us to receive the Sean Giblin Memorial Award.
Perhaps what means the most is something much simpler.
Our names will now be connected with his.
One of the best ways we can honor that connection is to help more people know the person whose name is on this award.
Sean Giblin lived with MS. He listened. He connected. He advocated. He helped.
And his story continues to make a difference.