ConnectMyVariant
ConnectMyVariant's mission is to end hereditary disease by bringing families together.
ConnectMyVariant is an educational health-focused 501(c)3 nonprofit organization that supports individuals and families with hereditary disease in their early detection and prevention efforts. We provide unique value by leveraging our evidenced-based family connection protocols to help people identify other at-risk relatives and help those relatives access genetic testing so that they can get optimal medical care. ConnectMyVariant brings people with the same genetic risk together through our variant database and community engagement events to share experiences and find common ancestors. ConnectMyVariant also works to increase awareness of the benefits of family outreach among physicians, others who provide prevention care, and the broader genealogy community.
Our key activities are:
- Working with patients to implement personalized family outreach plans
- Interactive educational workshops about sharing information on inherited disease risk
- Variant specific family reunions to share stories and plan outreach to cousins
- Genealogy assistance to help connect individuals in variant groups
- Individual equity and inclusion grants for family and community outreach
Need and Impact:
When hereditary disease risk is known, family outreach has been proven to be the most effective and cost-effective intervention for early detection and prevention. This family outreach, also known as cascade testing, is recommended by multiple guidelines. Despite overwhelming evidence, family outreach assistance is not reimbursed by insurance or integrated into healthcare. Many people suffer and die from hereditary disease that could have been prevented or caught early.
We have shown that our strategies to encourage family outreach can act as a communication multiplier. Our pilot research at the University of Washington showed that this approach enhanced patient experience, was considered ethical, and was appreciated by newly identified relatives. Our approach is low-cost and is 25 to 50 times more effective than awareness and education interventions that target the general population.
Equity and Inclusion:
ConnectMyVariant is committed to being a leader for equity, diversity, and inclusion in hereditary disease prevention. ConnectMyVariant’s goal is to spread awareness among all individuals and families about inherited disease risk. All project staff, participants, and partners in ConnectMyVariant have an equal voice in developing innovative ways to improve hereditary disease outreach and prevention for all people. By fostering a diverse and inclusive community, we can provide knowledge and opportunities that have been historically inaccessible to millions of people.
Fundraisers
Official fundraiser
Ashley Blair Doyle Scholarship Fund
ConnectMyVariant is pleased to announce the establishment of the Ashley Doyle Scholarship Fund, a tribute to the memory and life of Ashley Blair Doyle. Ashley was a fearless and tireless advocate for hereditary cancer prevention in general and especially for family outreach as an effective tool in hereditary cancer prevention. Developing a named scholarship will honor Ashley’s memory, support the cause that she was passionate about and will help further her goal of saving lives by preventing hereditary cancer. Ashley worked with Connect My Variant to inform as many close and distant relatives as possible and to let them know about genetic testing so that they would not have to go through what she did. The fund in memory of Ashley Blair Doyle is dedicated to furthering the education and training of up to two people each year, who are students studying genetic counseling or new to the field, by providing them with financial assistance in order to help give them the opportunity to participate in the annual National Society of Genetic Counselors’ meeting and trainings, with the goal of helping more people expand their knowledge, skills and educational access to hereditary cancer and other disease prevention and family outreach. -- Canadian donors -- Please note that ConnectMyVariant is registered as a 501(c)3 nonprofit in the United States. Because it is a non-Canadian organization donations will not be tax-deductible for Canadian income tax purposes. Our donation processor, Every.org does not convert to Canadian. Please convert to US dollars before entering your desired donation amount. Thank you for supporting the memory of Ashley Blair Doyle by helping prevent hereditary cancer!
- Raised
- $2,059
- Goal
- $20,000
16 supporters
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Genetic Counselors Support Cascade Outreach
Genetic counselors are key to hereditary disease prevention. Donate here if you are a genetic counselor who supports cascade family outreach. Individuals who donate $150 or more will be listed on the genetic counselor supporters page on the ConnectMyVariant website.
2 supporters
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