Let’s Meet The Moment

Right now, we are standing at a moment that has never existed before in the history of FSHD. Decades of research, advocacy, and community-building have brought us to the threshold of real, trajectory-changing therapies. But science alone is not enough. Without the financial resources to accelerate progress, expand inclusion, and remove barriers to access for every individual—regardless of age, stage, or mobility—we risk leaving people behind at the very moment hope becomes real. The stories you are about to read show what is at stake and why we cannot afford to wait or come up small.

Meet Kate and Evan – and consider what you can do to help us meet the moment on their behalf and on behalf of every family affected by FSHD.

Kate is living with early-onset FSHD

Kate is 15 years old. She loves art, building things, and making something out of nothing—turning an idea into something real. She’s a freshman in high school and jokes that her favorite class is “dismissal.” She’s funny, sharp, and unfiltered in a way that makes you lean in and listen.

She’s also living with early-onset FSHD.

Kate was diagnosed at six, after years of subtle signs—slow walking, hip pain, things that were easy to dismiss as “that’s just Kate.” But it wasn’t just Kate, it was the start of the progression of FSHD. And for Kate, it has already taken more, earlier, than it does for many.

Today, she is non-ambulatory. And because of her early-onset diagnosis, she has already been excluded from clinical trials and is also at risk of being excluded from access to treatment that could change her future.

Kate understands exactly what that means.

While her peers think about what they want to do with their lives, Kate is thinking about her future physical capacity. “People in my grade are thinking about careers,” she says. “I’m thinking about what I’ll actually be able to do.”

Her days are filled with constant calculations—things most people never have to think about. Will she arrive at school at the same time another student opens the doors? Or will she have to wait outside, hoping someone will notice and open the doors for her. She leaves class early to avoid crowded hallways. She navigates not just physical barriers, but the emotional weight of feeling unseen and misunderstood.

“Just because I’m physically disabled does not mean I’m mentally impaired,” she says. “I can have a conversation like any other teenager.”

And yet, what weighs on her most is not what she’s already lost. It’s what she stands to lose next.

Recently, Kate realized she could no longer do something she once could—get herself back into her wheelchair independently. “I kind of had a breakdown,” she admits. Because with FSHD, loss is not a single moment. It’s a series of moments, each one closing a door.

Still, Kate pushes forward. She skis using adaptive equipment. She creates art. She finds joy with friends. She describes her life as “highs and lows”—like skiing the slopes of a mountain. And she keeps going.

But she is also perfectly aware of what access means in this moment, for the FSHD community and for her.

“If we’re not included, it’s going to be years before it reaches us,” she says. “And by then… what will I have lost?”

Then, more directly:

“My adult life is going out the window if I don’t get access to a treatment.”

All Kate wants is a chance.

A chance to be included. A chance to stop the progression. A chance to have a future that looks more like possibility than limitation.

With the right investment, that future can be as real as the art she creates. And not just for Kate, but for every child like her.

But only if we act now to meet the moment.

Evan has been living with FSHD for decades

Evan’s life is defined by movement—adapting, adjusting, and pushing forward—even as FSHD steadily takes movement away.

He was diagnosed at the start of high school. At first, there was relief in finally having a name and an explanation for what he was experiencing. “There is something here…it’s not me,” he remembers thinking. But that clarity quickly gave way to a harder truth: this was a progressive disease, and no one could tell him exactly what would be lost, or when.

In the early years, much of Evan’s struggle was invisible. He was a young man who looked capable, even as everyday tasks required more effort, more energy, more calculation. Over time, that changed. Today, Evan is a full-time power wheelchair user. He can still stand briefly, still find ways to do the things that matter—but there is not a single part of his day that is untouched by FSHD.

Lifting a drink. Getting dressed. Playing with his young son. “There’s literally no activity that’s not impacted,” he says. And yet, like so many in the FSHD community, Evan has learned to adapt. To problem-solve. To move forward.

But adaptation has its limits.

After years of following research without allowing himself to become hopeful, Evan finally saw real momentum. Promising therapies entered clinical trials. The science felt real. For the first time, he believed a treatment could arrive in his lifetime.

And then he was excluded.

Because he could no longer walk a required distance, Evan did not qualify.

“I waited my whole life… and then a trial comes, and I can’t be part of it,” he says. “Why would it make sense for those with the earliest and latest stages of the disease not to be in the treatment scope?”

Evan’s story is not unique. It represents a critical gap—one that could leave thousands behind even after a therapy succeeds.

Evan recognizes the need for urgency.

“Every second counts. The longer we wait, the more people lose.”

Right now, the FSHD community stands at a pivotal moment. The science is advancing. Treatments are coming ever closer. But without the resources to present data that builds a case for equitable access for all, too many people, like Evan, will be left waiting.

Your investment can change that.

It can help accelerate the final steps toward a therapy—and ensure that when it arrives, it reaches everyone who needs it.

Because real progress leaves no one behind.

Momentum brought us to this moment

This is a pivotal time in the fight against FSHD. The moment is now. This is when we can make a transformative impact possible. Connect with Chelsea Moeller, our Development Director, to explore how your financial commitment can lead the way.

Chelsea Moeller
p: 781.301.6060 x7500
e: chelsea.moeller@fshdsociety.org