Only a small percentage of melanoma is hereditary, but knowing about CDKN2A in the family totally changes screening for melanoma and pancreatic cancer. Martha's story shows how family outreach is super important for CDKN2A families.
ConnectMyVariant.org
Government Administration
To end hereditary disease by bringing families together
About us
We are a health-focused nonprofit organization that helps individuals and families with hereditary disease, such as cancer risk, 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 and tailored preventative medical care. We bring people with the same genetic risk together through our variant database and community engagement events to share experiences, find common ancestors, and help each other get the best medical care. ConnectMyVariant also works to increase awareness of the benefits of family outreach among physicians, others who provide prevention care, and the broader genealogy community. Key activities include: Working with patients to implement personalized family outreach plans; Providing interactive educational workshops that train patients to talk to relatives about inherited disease risk; Helping organize variant specific family reunions to share prevention stories and plan outreach to cousins. Providing assistance to help connect individuals in variant groups, including equity and inclusion grants for family and community outreach. 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. It is recommended by multiple guidelines. Despite overwhelming evidence, family outreach assistance is not reimbursed by insurance or integrated into healthcare. For example, many people suffer and die from hereditary cancer that could have been prevented or caught early. Family outreach for many other hereditary diseases has similar prevention benefits. Our strategies are cost- effective and are 25-50x more effective than cancer prevention education and outreach interventions to the general population. Donate to ConnectMyVariant: https://www.every.org/connectmyvariant?utm_campaign=donate
- Website
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https://connectmyvariant.org/
External link for ConnectMyVariant.org
- Industry
- Government Administration
- Company size
- 2-10 employees
- Type
- Nonprofit
- Founded
- 2022
- Specialties
- Health prevention, Genetics, Genealogy, Genetic mutations, Health Education, Disease prevention, Hereditary disease, and Cancer
Employees at ConnectMyVariant.org
Updates
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CHEK2 is an interesting gene. The cancer risk is not as high as it is for other cancer risk genes. Because of that people tend to work with doctors to tailor their prevention to their own family history and preferences. Jennifer's story is a great example.
CHEK2 – Family Gene Share
https://familygeneshare.org
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Carole's story of helping her kids, sister, and aunts to "make it better for them" is impressive. Everyone to who knows about their genetic risk should do the same. Also, I never knew how to pronounce "BMPR1A" until I watched this video!
BMPR1A – Family Gene Share
https://familygeneshare.org
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This story from Dr. Alexea is powerful. So much work to get her initial genetic testing. She should have been listened to earlier. It is fantastic that she is reaching out to her family so that they don't need to go through the same thing.
PALB2 – Family Gene Share
https://familygeneshare.org
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We want to know your ideas! What methods have you used to talk to children, siblings, aunts, uncles, cousins and more distant relatives? Tell us your stories. Share successes, tips and other advice with [email protected]. We’ll edit and print contributions in a future newsletter, so be sure to tell us if we can share your story and if you want to remain anonymous.
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Genealogy DNA sites are a powerful way to find relatives who may share your genetic disease risk. Contacting them to talk about that is not necessarily easy. Here are some suggestions on how to do it.
Using Genetic Ancestry to Find Relatives with Hereditary Disease Risk
https://www.youtube.com/
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This Mark Hicks cartoon is amazing! It is so important for people to reach out to family members, and it can seem like there is no support from the health care system. It just does not fit with they system does. If you know anyone that wants help with family outreach, point the to ConnectMyVariant. If you want your health center or gastroenterologist to provide this assistance for all of their patients with hereditary disease risk, send them to ConnectMyVariant to ask about partnership opportunities.
Genetics and the Medical Braintrust Cartoon
markix.net
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The ConnectMyVariant July newsletter announces that we are seeking a board treasurer and has some great suggestions about how to spread the word about hereditary disease prevention to more relatives.
ConnectMyVariant July 2024 Newsletter
uw332.activehosted.com
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ConnectMyVariant has helped people with pathogenic genetic variants find common ancestors who were born before the American Revolution! Family history is an amazing way to find people who share genetic disease risk. It is powerful to see what a group of people working together through genealogy websites is able to do.
Family History Websites
https://www.youtube.com/
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ConnectMyVariant was featured on this week's LabMind Podcast. The future of genetic prevention is family outreach!
ARUP Scientific Resource for Research and Education: Educational Resources - An Interview With Dr. Brian Shirts | University of Utah
arup.utah.edu