When it comes to making an impact in the fight against VCP disease, it takes more than just hope—it takes action, commitment, and vision.
Serge Di Silvestro, a VCP patient, and his wife, Donna, are hopeful for a better future and they are willing to take action to fight VCP disease. Their dedication to make an impact was on full display when they sponsored a VCP biobank collection event in Chicago, Illinois, which brought together nearly 20 individuals to contribute biological samples to the Cure VCP Disease Biobank.
The biobank project collects blood and urine samples from patients to support VCP disease research, particularly biomarker discovery. Our research partners will test proteins in these samples to identify potential biomarkers that can detect or track VCP disease progression. Biomarkers are crucial for improving diagnosis, monitoring disease progression, and evaluating new treatments, while also making VCP disease more attractive for biotech investment. Through their support of the Cure VCP Disease Biobank, Serge and Donna are helping build the foundation for future effective treatments.
Serge's involvement in the VCP community is deeply personal. His journey with VCP disease has not been easy, but it motivates him to take action because of the love and responsibility he feels for his family.
Serge explains, “Thinking about my kids and grandkids hurt me even more [than my own personal struggles]. I had to get my mind back in shape and realized that I need to be dedicated to doing everything that I can to help our VCP group. This is the most important thing in the time left in my life.”
Many pitched in to make this collaborative research a success. COMBINEDBrain consented all of the patients and prepared the kits, and Dr. Yavarow, our scientific director, flew in to process and label the samples around the kitchen table. The Di Silvestro family opened their home to several families from across the Midwest who traveled to Chicago to participate. The biobank collection in Chicago was truly a testament to the power of the VCP disease community.
Every action—whether it's sponsoring a collection, donating a sample, or simply spreading awareness—can have a ripple effect in the fight against VCP disease. As Serge says, "Dedication and hard work have been a part of my life since I was young." It is this spirit of dedication that drives research forward, bringing us all closer to a cure.
To learn more about Serge Di Silvestro and his family’s journey, read our earlier blog post, “Ciao, My Name is Serge DiSilvestro”. Their story is a beacon of hope and a call to action for all of us to play our part in advancing VCP research.
Together, we can make a difference. Together, we can find a cure.
As we reflect on stories like Serge and Donna’s, we’re reminded of the importance of community and gratitude in driving progress. That’s why we’re excited to invite you to join our Rooted in Gratitude, Growing Towards a Cure campaign. Your support fuels initiatives like the Cure VCP Disease Biobank and accelerates the development of treatments and a cure for VCP disease. Every contribution—big or small—brings us closer to a future free of VCP disease.
Together, we can grow hope, advance research,
and make a lasting difference for families affected by VCP disease