ConnectMyVariant is a community of people dedicated to helping their families—not just their close relatives, but their extended families and their society. Thank you for being part of this community!
When I was in medical school, I learned about cascade genetic testing. Cascade testing works like a chain: one person who knows about their genetic risk tells individual relatives, who tell other individuals. Each person in the chain is on their own. Cascade outreach is only as good as the weakest link.
I think the ConnectMyVariant strategy would be better described as snowball genetic testing. When multiple people in a family or variant group work as a team, their efforts multiply. Like a snowball growing as it rolls, the more people work together, the greater the impact and the faster that impact grows. A team is able to do things that individuals could never do alone—give support and encouragement when outreach is difficult, work together to find common ancestors, or systematically reach out to second cousins.
The ConnectMyVariant community is two years old, and for most variant groups, the snowball is just starting to grow.
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This is amazing! One of the biggest challenges of prevention work is that you don’t see the full impact on the people whose lives you improve: the patients who don’t feel so alone because they met someone else with their variant, or the children who find out about their heart disease risk early, or the cousins who don’t get cancer because their relatives spread the word about a family variant. The good that you do, even if you don’t see it, is enormous. You are making a huge difference in disease prevention.
The mission of this community is to end hereditary disease by bringing families together. There is no other organization like ConnectMyVariant that focuses on family outreach for hereditary disease. We can achieve our goal with your support. The most important thing that you can do is reach out to your relatives and help them get genetic testing and access to the best medical prevention.
ConnectMyVariant’s leadership is committed to keeping our resources free for as long as we can. Our costs to provide these services are currently about $100 per person, every year.
To keep the snowball growing, we need your help.
Your donations fund services and positions that keep us going, including maintaining the database that links people who share the same variant. We have two part-time staff holding things together, Executive Director Barbara Rachelson and Volunteer Coordinator Betty Parkins. Many of you have met with Betty, who provides amazing one-on-one guidance for everyone who signs up.
Give to a respected organization. ConnectMyVariant earned a Candid Gold Seal of Transparency on GuideStar Charity Search. As a new nonprofit, we are pleased to have this visible and reputable recognition.
When you become part of the team that contributes time and resources, you power our work! ConnectMyVariant is almost entirely run by volunteers. I volunteer dozens of hours each week. Our Board of Directors and Advisory Committees collectively volunteer countless hours. The BYU Center for Family History and Genealogy donates its resources. All Family Outreach Navigators and Variant Champions volunteer their time. Your efforts as part of this team will reach beyond you. They will benefit generations to come.
Please consider making a gift through Every.org to help your extended family and other families like yours.
With enthusiasm and hope,
Brian Shirts, MD, PhD
for the ConnectMyVariant Community
P.S. You can extend your reach by hosting a personalized fundraiser through Every.org. Setting up a fundraiser on Every.org, our fundraising platform, is easy. Simply choose an image, post a video on YouTube with your story, and/or write a message. Every.org automatically creates a web page that features your content with all the information necessary to make donations directly to ConnectMyVariant. The process takes about 5 minutes. You can then share the page with your friends, relatives, and social media followers. Follow this link to set up a ConnectMyVariant fundraiser: https://www.every.org/connectmyvariant/fundraiser.
Every person who starts a fundraiser by December 31, no matter the amount raised, will be entered in a raffle for an appreciation gift of one quart of Vermont pure maple syrup. In addition, if your fundraiser raises $50 or more this year, ConnectMyVariant will send you or the person of your choice an AncestryDNA or MyHeritage DNA kit as an appreciation gift.
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