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GoFundMe Heroes

This young woman turned heartbreak into a lifelong mission to spread love and kindness

This young woman turned heartbreak into a lifelong mission to spread love and kindness
Images courtesy of Letters of Love
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When Grace Berbig was 7 years old, her mom was diagnosed with leukemia, a cancer of the body’s blood-forming tissues. Being so young, Grace didn’t know what cancer was or why her mother was suddenly living in the hospital. But she did know this: that while her mom was in the hospital, she would always be assured that her family was thinking of her, supporting her and loving her every step of her journey.

Nearly every day, Grace and her two younger sisters would hand-make cards and fill them with drawings and messages of love, which their mother would hang all over the walls of her hospital room. These cherished letters brought immeasurable peace and joy to their mom during her sickness. Sadly, when Grace was just 10 years old, her mother lost her battle with cancer.“

Image courtesy of Letters of Love

Losing my mom put the world in a completely different perspective for me,” Grace says. “I realized that you never know when someone could leave you, so you have to love the people you love with your whole heart, every day.”

Grace’s father was instrumental in helping in the healing process of his daughters. “I distinctly remember my dad constantly reminding my two little sisters, Bella and Sophie, and I that happiness is a choice, and it was now our job to turn this heartbreaking event in our life into something positive.”

When she got to high school, Grace became involved in the Leukemia & Lymphoma Society and a handful of other organizations. But she never felt like she was doing enough.

“I wanted to create an opportunity for people to help beyond donating money, and one that anyone could be a part of, no matter their financial status.”

In October 2018, Grace started Letters of Love, a club at her high school in Long Lake, Minnesota, to emotionally support children battling cancer and other serious illnesses through letter-writing and craft-making.


Image courtesy of Letters of Love

Much to her surprise, more than 100 students showed up for the first club meeting. From then on, Letters of Love grew so fast that during her senior year in high school, Grace had to start a GoFundMe to help cover the cost of card-making materials.

Speaking about her nonprofit today, Grace says, “I can’t find enough words to explain how blessed I feel to have this organization. Beyond the amount of kids and families we are able to support, it allows me to feel so much closer and more connected to my mom.”

Since its inception, Letters of Love has grown to more than 25 clubs with more than 1,000 members providing emotional support to more than 60,000 patients in children’s hospitals around the world. And in the process it has become a full-time job for Grace.

“I do everything from training volunteers and club ambassadors, paying bills, designing merchandise, preparing financial predictions and overviews, applying for grants, to going through each and every card ensuring they are appropriate to send out to hospitals.”

Image courtesy of Letters of Love

In addition to running Letters of Love, Grace and her small team must also contend with the emotions inherent in their line of work.

“There have been many, many tears cried,” she says. “Working to support children who are battling cancer and other serious and sometimes chronic illnesses can absolutely be extremely difficult mentally. I feel so blessed to be an organization that focuses solely on bringing joy to these children, though. We do everything we can to simply put a smile on their face, and ensure they know that they are so loved, so strong, and so supported by people all around the world.”

Image courtesy of Letters of Love

Letters of Love has been particularly instrumental in offering emotional support to children who have been unable to see friends and family due to COVID-19. A video campaign in the summer of 2021 even saw members of the NFL’s Minnesota Vikings and the NHL’s Minnesota Wild offer short videos of hope and encouragement to affected children.

Grace is currently taking a gap year before she starts college so she can focus on growing Letters of Love as well as to work on various related projects, including the publication of a children’s book.

“The goal of the book is to teach children the immense impact that small acts of kindness can have, how to treat their peers who may be diagnosed with disabilities or illness, and how they are never too young to change the world,” she says.

Since she was 10, Grace has kept memories of her mother close to her, as a source of love and inspiration in her life and in the work she does with Letters of Love.

Image courtesy of Grace Berbig

“When I lost my mom, I felt like a section of my heart went with her, so ever since, I have been filling that piece with love and compassion towards others. Her smile and joy were infectious, and I try to mirror that in myself and touch people’s hearts as she did.”

For more information visit Letters of Love.

Please donate to Grace’s GoFundMe and help Letters of Love to expand, publish a children’s book and continue to reach more children in hospitals around the world.

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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.

True

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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