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Looking Forward on Our Three-Year Anniversary |
Our Story
ConnectMyVariant began as a scientific study when Dr. Brian Shirts, a molecular pathologist, saw his research collaborators building large pedigrees based on people who shared the same cancer mutations. The families in these pedigrees experienced major health benefits as they learned about their risk before cancer developed. But only a small number of families got this advantage—those whose variant had been picked by researchers.
Shirts’s study aimed to answer a simple question: Can people with mutations build their own pedigrees by working with family members? If so, every family with increased hereditary risk could benefit, not just those that happened to have variants studied by cancer researchers.
The result was clear and powerful. Not only could families build their own pedigrees, but participants received extra benefits as they reached out to close and distant relatives. They found a support system to talk about their family outreach activities. They built friendships with others who shared the same variant and had gone through similar experiences.
To put these findings into practice, Shirts launched ConnectMyVariant in January 2021 as a public health initiative at the University of Washington, where he worked at the time. Within two years, the project grew large enough that it needed a new structure so more people could join and take on leadership roles. In October 2022—three years ago this month—ConnectMyVariant became an independent nonprofit organization.
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Our Growth
Since becoming a nonprofit, ConnectMyVariant has expanded to serve families with more conditions, including:
We’ve also increased our capacity by developing business-to-business partnerships. We now work with:
Health care providers to integrate our tools into their clinical practices.
Community organizations to increase outreach.
Research consortiums to help make our tools even more effective.
“This is just the beginning,” Shirts said. “Our goal is to end preventable heredity disease, and we’re moving toward that. We talk about this not as cascade testing, but as snowball testing, because the more people who are doing it, the bigger the impact and the faster the impact grows.”
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As we celebrate our third anniversary, we have enormous gratitude for all members, partners, volunteers, supporters, Family Outreach Navigators and variant champions who have supported each other to get us this far. Thank you for working to prevent hereditary disease in your family.
Our Future
Moving forward, ConnectMyVariant’s priorities are to reach more people and scale our resources to fully serve our membership. We’ll work to:
Create more opportunities for member involvement and leadership.
Expand enrollment in underserved communities.
Add multilingual resources.
Build up the Family Outreach Navigator program.
Generate risk estimates for specific variants.
To learn about opportunities to get more involved with ConnectMyVariant as a member, email info@connectmyvariant.org.
To learn more about ConnectMyVariant’s successes and goals, read or download the Fiscal Year 2025 Annual Impact Report.
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ConnectMyVariant is a 501(c)(3) nonprofit.
Your tax-deductible donation helps families prevent hereditary disease.
Visit our donation page at Every.org to give.
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