Hereditary Cancer Week and Previvor Day are still a couple months away, but advocates need to start hanging up posters and playing up the two events to raise awareness. Especially now that it seems like clueless clowns are running the circus and cancer research and prevention are no longer public health priorities. It’s up to us advocates to raise our voices to try and save lives.
The posters can be downloaded here: www.genetionary.org/poster.
A free*
activity book to introduce kids to genomic science. (And since so many adults
are absolutely clueless when it comes to basic biology, genes, etc., maybe a
lot of them will find it educational as well.)
It can be downloaded at www.genetionary.org/DNA
*For personal, noncommercial use only. If you any have questions about my copyrighted intellectual property usage, please DM me.
A comic book-style resource to help grown-ups understand inherited genetic mutations and hereditary cancer risk? Think it’s too simple for adults?
Think again.
My wife died a very horrible death from a very preventable cancer because some members of her family didn’t understand what an inherited pathogenic genetic mutation was and what it might mean for other members of the family. And this is in a family devastated by cancer over multiple generations.
These relatives knew about the mutation for years, but didn’t share vital information until after my wife’s cancer diagnosis. They obviously needed someone or something to help them understand the big family picture when they received their genetic test results.
When I was asked to volunteer to help create the art for this project, I did not hesitate. However, to be honest, it was emotionally difficult. Working on it kept reminding that my wife’s terrible death from hereditary cancer was so preventable.
Go to https://connectmyvariant.org/genetic-inheritance-comic-book to download this free book and learn more about CMV’s mission to end hereditary disease by bringing families together. If you would like a professionally printed version, you can reach out via email at info@connectmyvariant.org.
And please pass this info on! And save some lives!
Something that I find sad and frustrating as a hereditary cancer advocate is just how little people know about genetics. It's really hard to have a serious discussion about inherited genetic mutations and hereditary cancer awareness and prevention when people have no clue what genes really are and what they actually do.
So I created this free* resource to
introduce kids to genomic science. (And with the hope that many adults will
find it educational as well.)
It can be downloaded at www.genetionary.org/DNA
When my daughter was born in 1993, the announcement about the discovery of the tumor suppressor gene BRCA2 was a couple years away. And the coining of the word “previvor” was still several years off. Both of those future events would turn out to be profoundly significant.
In 2017, my daughter had genetic testing and learned she had inherited a mutation in one of her BRCA2 genes. A mutation that we now know to have been passed down in her mother’s family for centuries. That’s right, centuries. Knowledge of the mutation has allowed my daughter to take steps to significantly reduce her cancer risk. She is a previvor.
As part of our effort to raise hereditary cancer prevention awareness, I set out to design a previvor shirt for my daughter. But I soon realized that there wasn’t really a symbol for previvorship. So I sat down at my drawing table and sketched out about a dozen designs before settling on this one. I wanted the symbol to be unique and open for personal interpretation. But with no cancer ribbon in the design.
This coming Father’s Day, I will be celebrating my daughter’s previvorship and courage. And I will also be celebrating the science that has given my child a chance to live a full life cancer-free. A life her late mother did not get.
