Patient Stories: Ensuring MPNs are seen, understood, and never forgotten

One patient hoped to bring a few dozen people together and instead saw over 200 join in person and online. Another told his MPN story to strangers around the world and watched as they began telling stories of their own. A third transformed a personal connection into a grassroots fundraising effort that rallied friends, family, and supporters to invest in research when time was running out. Their approaches were different, but their goal was the same: to ensure that MPNs are seen, understood, and never forgotten.

As we look back at Blood Cancer Awareness month and MPN Awareness Day, we're highlighting three members of the MPN community who took action. Their stories remind us that there is no single way to make an impact. Whether through education, conversation, fundraising, or community-building, every voice helps move MPN research forward and brings us one step closer to better treatments and, ultimately, a cure.

Bringing patients together: Jean Diesch and the power of local connection 

Diagnosed with polycythemia vera in 2009, Jean Diesch remembered how isolating the early years could feel. “I went 3 1/2 years before I ever met anybody with this disease,” she said. That experience helped shape her commitment to making sure other patients, families, and caregivers would not have to navigate MPNs alone. 

During Blood Cancer Awareness Month, Jean helped revive and expand a tradition her Pittsburgh support group had started years earlier: bringing patients together to meet MPN specialists, ask questions, and hear reliable information in person. What began as a hoped-for gathering of 40 to 50 people grew to 133 attendees in the room and about 60 more online, drawing patients from across Pennsylvania, Ohio, West Virginia, and beyond. Patients and caregivers heard from John Byrd, MD, Salman Fazal, MD, James Rossetti, DO, and Stanley Marks, MD, with additional information from MPN Research Foundation about the MPN PROGRESSion Registry.  

The event offered more than medical information. Through the panel discussion, audience Q&A, dinner, and shared conversation, it created space for people affected by MPNs to see themselves reflected in others. For Jean, who is a Patient Impact Council member and MPN Hero, connection is the point. “It’s like a mission — to be able to take people who are still afraid of what their diagnosis is and pair them with other people, so they know they’re not alone.”

Starting a conversation that crossed borders: Francis Laleman shows how one story can connect a global community

For nearly 20 years, Francis Laleman has lived with an MPN. As a certified MPN Research Advocate and community facilitator, Francis saw MPN Awareness Day as an opportunity to create space for conversations that often go unspoken. Drawing on the Warm Data Lab framework developed through the International Bateson Institute, he hosted an online gathering called People Need People, bringing together participants from cities around the world to reflect on the human experience of illness and connection. 

The conversation began with Francis sharing his own journey from diagnosis through nearly two decades of living with an MPN. Participants then moved into small breakout groups, where they explored a guiding question: What is it that remains in a changing world? Participants reflected on family, caregiving, chronic illness, resilience, and the relationships that sustain people through life's challenges. As Francis explained, the goal was not to collect data points but to create opportunities for people to exchange what he calls "warm data" -- the lived experiences and stories that help people better understand one another. 

By the end of the session, many participants who had arrived as strangers were sharing deeply personal experiences of their own. For Francis, that openness was the event's greatest success. "We sometimes forget that behind these cold data, there are human beings with stories to share," he said. His hope was that participants would leave with a deeper appreciation for their shared humanity and a renewed willingness to listen, speak openly, and support one another. 

Turning awareness into action: Elizabeth Keany transformed a personal story into support for MPN research  

For Elizabeth Keany, awareness became action soon after being diagnosed with polycythemia vera. As she began learning what it meant to live with an MPN, the Foundation became a source of information, community, and hope. “This Foundation has been a lifeline for me since my diagnosis,” she shared.

When MPN Research Foundation invited the community to take action during Blood Cancer Awareness Month, Elizabeth responded by launching a fundraiser. Her message was deeply personal: as a newly diagnosed PV patient and a mom, she wanted to help accelerate research that could lead to better treatments for patients like her and for the thousands of others living with MPNs. “As a mom to a baby boy, I want to be here for every milestone,” she wrote. “Thousands of other MPN patients feel the same.”

That honesty resonated. Friends, family, and supporters rallied around Elizabeth’s fundraiser, helping her raise more than $19,000 for MPN research. Her effort showed how one person’s story can move a community from awareness to action and turn personal connection into meaningful support for progress. As Elizabeth reminded her network, “Every dollar raised here brings us closer to better treatments—and someday, a cure.”

United by a shared purpose  

Whether they were bringing patients and experts together, creating space for meaningful conversations, or raising funds for research, each of these advocates demonstrated a shared belief that progress is possible when people take action. For Jean Diesch, that commitment extends far beyond a single event. “It’s like a mission: to take people who are still afraid of their diagnosis, connect them with others, and help them know they’re not alone.”

That same commitment to patients drives MPN Research Foundation’s mission to advance research, elevate the patient voice, and strengthen connections across the MPN community. While there are many ways to make an impact, these stories remind us that while there are many ways to make an impact, every act of advocacy, education, and fundraising helps move the field forward.