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How do you get tweens to care about community service? Easy: Let them lead.

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One day in 2016, the kids of the Ridgefield Boys & Girls Club in Connecticut met to discuss some hard truths.

"We had a guest speaker come in," says Boys & Girls Club supervisor Jeff Goncalves, who organized the talk for a leadership program within the group called Torch Club.

"It was to benefit the Friends of Karen organization, which helps families of children who unfortunately are suffering from a terminal illness."


Among the topics discussed was the idea that many sick kids miss out on key experiences in their childhood because of how their illness interferes with daily life.

All photos courtesy of Torch Club/Boys & Girls Clubs of America, used with permission.

The Club's leaders asked the kids how they would feel if someone they knew, someone their age, had to skip their birthday because their medical bills were too high for them to afford to celebrate, Goncalves recalls. "That really hit home with our members."

Lots of people have a notion of "tweens" and young teens as being self-absorbed. But the Club’s reaction to the Friends of Karen organization proves that’s not so.

"Our executive board members decided to come up with a project idea," Goncalves says. But any uncreative fundraising ideas were out of the question — as Goncalves explains, "They know that I hate regular bake sales" — so they had to think out of the box.

Their answer? "A bakeless bake sale."

The kids reached out to everyone on their Club’s contact list and asked for cake ingredients, along with all of the rest of the things one might need to throw a birthday party. Instead of baking cakes to raise money, they gave kids the opportunity to have one for their birthday by providing all the tools in a "birthday bag."

"Cake mix, candles, frosting, napkins, plates — pretty much anything that could go into having a birthday party," Goncalves says.

The project was a success.

By the end, they’d provided birthday bags for almost 20 kids who would otherwise have gone without. It was so successful that they even decided to enter their project in the annual Torch Club Awards, which recognize Boys & Girls Clubs around the country for community volunteerism and service. They won first place and received a grant from Old Navy's ONward! program, which helps support many of Torch Club's activities.

What was even more surprising, though, was that this group of middle schoolers responded to a pretty heavy topic — terminal illness in their peers — in a well-adjusted and actionable way.

"That age is tough to work with in general," Goncalves says. "But when you find something, you know, a cause or a passion or something that really hits home, it brings everyone together in a way where we can focus their attention to helping, more than scaring them or making it awkward."

Torch Club has figured out the key to inspiring middle schoolers is to act. Just hand them the reins.

"The key is truly to let them lead," says Teresa Welch, vice president of program, training, and youth development services for the national headquarters of Boys & Girls Clubs of America.

"A lot of times as adults we sort of forget that. We assume that they need us to lead them," she says. "But when it’s led by youth, that’s when they’re absolutely the most successful."

The Boys & Girls Clubs' mission, through programs like Torch Club is to teach leadership and life skills to young kids, in order to prepare them for the challenges of adult life. But those leadership opportunities have advantages in the present, too.

Leadership gets younger kids engaged because it allows them to decide which issues to address, Welch says, and they can pick issues that impact their own community. She gives an example where kids who liked to skateboard got in trouble for graffiti that went up on buildings near where they skate.

"The kids will start talking about, well, we’re in trouble all the time for having our skateboards because they think we’re the ones doing the graffiti. But that wasn’t us," Welch recalls.

But instead of allowing the kids to grow resentful of the authority with which they had their conflict, Boys & Girls Clubs youth development staff encouraged them to come up with a creative solution.

"So they did a project where they actually painted over the graffiti with these beautiful murals," Welch says. In doing so, the Club both helped beautify the neighborhood and learned how to solve a problem in their community.

The Torch Club program at Boys & Girls Clubs is showing all of us that getting kids engaged young is possible — and it has nothing but positive results.

Young people who volunteer improve their community, their relationships with other kids, and themselves. Civic engagement shows kids how to take their energy and emotions and channel them into something good.

"All research shows that when young people volunteer, feel part of their community, and are engaged, that overall they will be more successful," Welch says.

"That’s a big part of the job. It's why I love working in the field that I work," Goncalves says. "To change the mindset of caring about themselves and being that self-absorbed tween to thinking outside the bubble, outside their community."

"It's remarkable, and we see it all the time," he adds. "It's why a lot of people in our field stick with it for life."

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Three women, three MS journeys: How multiple sclerosis looks different for everyone

Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

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It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.

Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.

All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.

To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.

woman with horse, woman riding horseGina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.

“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”

As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.

“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.

Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.

“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”

To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.

Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.

Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.

Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.

woman in wheelchair holding medal, woman rowingNathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.

“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”

However, learning more about the disease—and the realities of disease progression—scared her.

“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.

She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”

By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.

Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.

“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.

Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.

“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”

woman exiting water after swimming, woman with great daneHelga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.

“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”

In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.

“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.

However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.

Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.

Part of how she manages her MS is by looking at the positives.

“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”

Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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