Partners in Progress: Rare Disease Biosample Collection Family Event
- Cure VCP Disease, Inc.
- 4 days ago
- 2 min read
How are VCP Families "Partners in Progress"? One way is by hosting and attending a rare disease biosample collection event. At these collection events, patients and their family members donate blood and other samples to be used for various research projects around the world. This isn't passive participation—it's VCP families leading the way. These collection events enable patients and their relatives to step into an active role in shaping the future of VCP science.
On Friday, November 21, 2025, the Di Silvestro family graciously hosted their second biosample collection event at their family home in Chicago, IL. Together, 5 families and 15 patients and family members came together to donate biosamples for our biorepository.
A family-hosted VCP Research Collection like this brings the power to drive VCP research closer to home.
These samples can be used by researchers around the world to better understand VCP disease and potentially develop biomarkers and treatments. Participation from our families matters—everyone involved helps accelerate research that has the potential to benefit every individual and family affected by VCP variants. We are thankful for our partnership with COMBINEDBrain who helps to facilitate the biorespository and collection events.
Being a "Partner in Progress" is also about connection. VCP families are spread across the country and around the world, so most interactions happen virtually. These gatherings change that. For some, it's the first time they've met another affected family outside their own—and meeting others who understand the journey, and who are actively doing something about it, shows them they are not powerless. That empowerment brings hope.
We are proud to have Director of Scientific Engagement and Collaborations, Zollie Yavarow, PhD, travel from Boston to meet with patients and their families as she continues to champion research initiatives for Cure VCP Disease.
“Collecting for the biorepository connects me to the real people behind my daily work, all while pipetting blood, freezing samples, and making sure the science moves forward.” - Zollie Yavarow, PhD
Our families are contributing critical resources researchers need—samples, data, and invaluable lived experience. To transform these contributions into therapies requires dedicated funding, and that's where your support makes all the difference.
