ConnectMyVariant

ConnectMyVariant's mission is to end hereditary disease by bringing families together.

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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.

Seattle, WA

Small organization

connectmyvariant.org

A 501(c)(3) nonprofit, EIN 88-3822242

Fundraisers

Feed fundraiser card link to Help Put an End to Hereditary Disease

Fundraiser by Deborah Doman

Help Put an End to Hereditary Disease

Is your family history dotted with deaths from various cancers? Mine was! It wasn't until I was diagnosed with ovarian cancer and discovered, through genetic testing, to be a carrier of the PALB2 gene mutation that I realized what had appeared for generations to be unrelated "dots" of cancer deaths, were, in fact, connected dots! Connected as a result of family members, who unbeknownst to them, had likely inherited the PALB2 gene mutation. The good news is that hereditary diseases are preventable and family history is one of the keys to prevention! You don't have to be diagnosed with cancer or other hereditary diseases before discovering you're a carrier of a genetic mutation! Over the last several years, I have had the wonderful opportunity to work closely with ConnectMyVariant which is a non-profit organization focused on ending hereditary disease by bringing families together to help identify other at-risk relatives and helps those relatives access genetic testing so that they can get optimal medical care. During this season of giving, I hope you might consider making a donation, of any size, to ConnectMyVariant.

Raised: $600
Next milestone: $750

3 supporters

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Feed fundraiser card link to Ashley Blair Doyle Scholarship Fund

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: $2,184
Goal: $20,000

17 supporters