Through the MUHC Foundation, one family helps fuel breakthrough in rare cancer research

Montreal, June 16, 2026— One family’s generosity is helping drive a major breakthrough in rare cancer research at the MUHC. Through the MUHC Foundation’s SDR Project, Jim Hindley, his granddaughter Shawnea Roberts, and the Hindley-Roberts family came together to support the work of Dr. Donald Vinh, investing in research they believed could make a real difference for people living with rare and genetic diseases. Today, that support is helping fuel a promising discovery that could open the door to new treatments for Kaposi’s sarcoma, a rare cancer with limited treatment options.

Led by Dr. Donald Vinh, a genetic disease expert at the MUHC, researchers have identified a new gene linked to Kaposi’s sarcoma, a rare cancer caused by human herpesvirus 8 (HHV-8), a virus from the same family as cold sores and chicken pox. The discovery could help pave the way toward more targeted and potentially lifesaving treatments for patients facing this difficult disease.

The research team discovered that a mutation in the DDX58 gene prevents the body from properly detecting the virus, allowing the infection to persist and potentially lead to cancer. The findings are already helping researchers better understand how the disease develops and how it may be treated in the future.

“We’ve discovered a new gene that allows this virus, at least in one human patient, to become cancerous. This finding is already helping us understand which molecular pathway might allow this virus to have its dangerous consequences, which will inform us on how to treat it. This breakthrough wouldn’t have been possible without the very generous support of the Hindley-Roberts family, reminding us of the vital role donors play in advancing truly innovative research.”

—Dr. Donald Vinh, FRQS Distinguished Clinician-Scientist, MUHC

The discovery builds on years of innovative work made possible through the SDR Project, an initiative launched through the MUHC Foundation by Jim Hindley and his granddaughter, Shawnea. For the Roberts-Hindley family, supporting Dr. Vinh’s work was deeply personal, inspired by Shawnea’s lifelong journey living with a genetic disease.

The SDR Project has since grown into a movement that has already raised more than $2.2 million — with a bold goal of $3.1 million — to accelerate discoveries for people living with rare and often undiagnosed diseases. Driven by a deep belief in Dr. Vinh’s work, the family is helping fund groundbreaking research and advanced sequencing technology capable of analyzing up to 25,000 genes at a time.

“Growing up with a genetic disease meant living for years without answers. For my family and me, that uncertainty was incredibly difficult. Breakthroughs like this offer renewed hope to patients and families who have spent years searching for an explanation and a path forward. Seeing research progress from discovery to the potential for real-world impact is profoundly meaningful. It represents not only scientific advancement, but also the possibility of earlier diagnoses, better care, and brighter futures for families across Canada and around the world. Moments like this remind us why this work matters so deeply.”

—Shawnea Roberts, Co-Founder of the SDR Project

Kaposi’s sarcoma primarily affects people with weakened immune systems, including those living with HIV or undergoing immunosuppressive therapy. Because it is a rare cancer, treatment options have historically been limited. This discovery is helping open the door to new possibilities and renewed hope.

The findings are also helping researchers explore new treatment approaches that could better target the disease and improve outcomes for patients in the future—another example of how donor-funded research can lead to real progress in care.

“The SDR Project was born from our family’s personal journey living with rare and debilitating genetic diseases, so this discovery is incredibly meaningful to us. Every breakthrough brings hope to families like ours, who are searching for answers. We are proud to support research that is moving us closer to better treatments, earlier diagnoses, and better care.”

—Jim Hindley, Co-Founder, SDR Project

There is real momentum behind the SDR Project, which is already more than halfway to its $3.1 million goal, thanks to the generosity of MUHC Foundation donors. This milestone highlights the collective impact of a community dedicated to supporting research and making personalized care truly accessible.

“Thanks to the vision and generosity of the Hindley-Roberts family, Dr. Vinh and his team are transforming care and providing long-awaited answers to patients and families. This breakthrough shows us what’s possible when our community decides to fund innovative work. Philanthropy gives researchers the ability to push boundaries and truly focus on moving health care forward in tangible ways.”

—Marie-Hélène Laramée, President and CEO, The MUHC Foundation

This life-changing discovery reminds us that breakthroughs begin with people who want to make a difference and fund work that matters. Thanks to the generous donors of the SDR Project, the MUHC’s rare disease experts are bringing new hope to the many people living with rare diseases like Kaposi’s sarcoma.

Learn more about the innovative work taking place through the SDR Project and how you can help support the future of rare disease research.