Today we’d like to introduce you to Kathleen Bolton.
Hi Kathleen, can you start by introducing yourself? We’d love to learn more about how you got to where you are today?
My path into this work really started through a deep connection to the rare disease community. What stood out to me early on is how complex and often isolating a diagnosis can be—not just medically, but emotionally and logistically for families trying to navigate something most people have never even heard of.
As I became more involved, I saw firsthand the gaps that exist in rare diseases: delayed diagnoses, limited research funding, and a real need for community and support. That experience led me to work more closely in the nonprofit space, where I could help bridge some of those gaps and create meaningful connections for families.
That’s ultimately what brought me to Cure JM. The organization is uniquely positioned in the juvenile myositis space—not only funding critical research to improve treatments and outcomes, but also building a strong, supportive community for families who often feel alone in their journey. Through events, outreach, and advocacy, I’ve had the opportunity to help raise awareness and connect people to resources that can truly make a difference.
Today, my work continues to be driven by that same goal: making sure families facing rare diseases feel seen, supported, and hopeful—while also helping advance the research that will lead to better treatments and, one day, a cure
We all face challenges, but looking back would you describe it as a relatively smooth road?
It definitely hasn’t been a smooth road. Working in the rare disease space comes with unique challenges, many of which stem from how little awareness and funding these conditions receive. Families are often navigating long diagnostic journeys, limited treatment options, and a lack of readily available information—and as someone working alongside them, you feel the weight of those gaps every day.
On the nonprofit side, there’s also the ongoing challenge of ensuring we have the resources to meet those needs. Whether it’s funding research, supporting families, or hosting community events, so much depends on awareness and donor support. It can be difficult at times to balance the urgency of the mission with the realities of limited visibility.
That said, those challenges are also what make the work so meaningful. Organizations like Cure JM are constantly working to close those gaps—funding critical research, expanding support programs, and creating spaces where families can connect and feel less alone. Being part of that progress, even when it’s incremental, is incredibly motivating and a reminder of why this work matters so much.
Great, so let’s talk business. Can you tell our readers more about what you do and what you think sets you apart from others?
Cure JM is a nonprofit organization dedicated to finding a cure for juvenile myositis and improving the lives of the families affected by it. Juvenile myositis is an extremely rare autoimmune disease, which means it often doesn’t receive the level of attention or funding that more common conditions do—so our work is focused on changing that.
At our core, Cure JM funds critical research aimed at better treatments, outcomes, and ultimately a cure. But just as importantly, we provide support and resources for families navigating a diagnosis that can feel overwhelming and isolating. That includes educational tools, community-building opportunities, and events that bring people together in meaningful ways.
What really sets Cure JM apart is the strength and closeness of the community. Because the disease is so rare, families often go from feeling completely alone to being deeply connected through the organization. There’s a very real sense of “no one fights alone,” and that shows up in everything from our family support programs to our Walk Strong events across the country.
Brand-wise, what we’re most proud of is that combination of impact and connection—funding research that moves the needle forward while also creating a space where families feel seen, supported, and empowered. For readers, the biggest thing to know is that even though this is a rare disease, the need is very real—and getting involved, whether through attending an event, spreading awareness, or supporting the mission, truly makes a difference.
What are your plans for the future?
Looking ahead, the focus is really on growth—both in awareness and impact. In the rare disease space, progress depends so heavily on visibility and funding, so a big part of the future is continuing to expand how many people know about juvenile myositis and understand the urgency behind it.
For Cure JM, that means continuing to invest in research that brings us closer to better treatments and, ultimately, a cure—especially with several promising clinical trials underway right now that are showing real potential to improve outcomes for kids. At the same time, we’re growing our community outreach so more families can access support earlier and feel connected from the start.
Events are a huge part of that momentum. Our Walk Strong program continues to expand nationally, with plans to launch six new walk locations in the next fiscal year alone. Locally, we’re especially excited about growing our Dallas walk—because if there’s anywhere that can go big, it’s Texas. The goal is to build it into an even larger, more impactful event that brings the community together while raising critical funds and awareness.
Overall, the future is about building momentum—more awareness, more research, and more connection—and making sure Cure JM continues to lead the way in both advancing science and supporting families every step of the journey.
Contact Info:
- Website: https://www.curejm.org
- Instagram: @curejm and @walkstrongtocurejm
