2/27/24

DNA and Inherited Mutations Simplified

 

This is a whimsical take on a very serious subject that, unfortunately, many grown-ups do not grasp. As a hereditary cancer advocate, I have found that many adults don’t really understand basic biology, much less genetics. Add in genetic mutations and cancer, and the mental gears stop turning.
 
I spent a big part of my illustration career creating artwork that helped to visually explain complex scientific concepts to 6 to 9-year-olds. So I thought I’d use those skills to maybe help more people understand genetics and hereditary cancer.
 
I do this with a heavy heart and with the hope that it will help prevent the loss of other precious lives. My wife died of a hereditary cancer that was caused by a BRCA2 mutation and the outright stupidity of others. Her cancer diagnosis and untimely death could have been prevented had her relatives understood genetics and the seriousness of the risk of cancer to other family members and urgently shared gene sequencing information like mature intelligent adults.

Please share. Thank you. A PDF of this graphic can be downloaded at https://genetionary.org/DNA.html

 

 

2/21/24

Tornadoes, Hereditary Cancer, & the Duty to Warn

 Many cancer patients and cancer caregivers liken a cancer diagnosis to having their lives torn apart by a tornado.

As National Cancer Prevention Month winds down, I wanted to share one more thought on how far we still have to go in the quest to prevent cancer.

As a former cancer caregiver, now widower, I can understand comparing a cancer diagnosis to a tornado. Hereditary cancer literally ripped life apart. It absolutely destroyed hopes, dreams, and plans. It changed everything.

While I have never experienced a major tornado, I have experienced a few small ones at various times in my life here in Phoenix. (Yes, we have tornadoes in Arizona. And we even have warning systems in place here.) The last one that tore through my neighborhood happened while I was caring for my late wife as she fought stage 4 hereditary breast cancer. Fortunately, none of the tornadoes directly hit my house. But cancer did.

My wife’s horrible death from cancer was very preventable. The information that could have saved her life was available for years, but it did not get shared. She was never expressly warned of her risk of carrying an inherited mutation and her cancer risk. The Duty to Warn is something I feel very strongly about, be it tornadoes or inherited mutations.

You can read more about what happened to my late wife in a story I wrote for FORCE: Facing Our Risk of Cancer Empowered, https://www.facingourrisk.org/blog/an-individual-doesnt-get-cancer-a-family-does

More to think about:

According to the American Cancer Society, 609,820* people died of cancer in 2023. 10% of all cancers are hereditary. That means over 60,000 cancer deaths possibly could have been prevented if those at risk had been identified through genetic testing prior to diagnosis.

*https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21763

 

 

 

 

 

 

 

 

 

2/13/24

Sharing is Caring

 Broken genes should not lead to broken hearts.
Learn how family communication can help prevent hereditary cancer.

www.connectmyvariant.org

(I created this graphic as a volunteer artist and advocate. And as someone who has suffered a broken heart because genetic information was not shared in my late wife’s family.)

2/2/24

Saying the Quiet Part Out Loud

A friend with a family history of cancer asked their doctor about genetic testing. The doctor’s response? “You don’t want to go down that rabbit hole.” What?! WHAT?!

Genetic testing should be a standard of care to prevent cancer. It saves lives. It would have saved my wife’s life. It’s given my child a chance to live a full life cancer-free.

4 in 5 women with a family history of cancer have not been offered genetic testing. 3 in 4 people eligible for Lynch Syndrome screening have not been tested.

There are hereditary cancers that can be prevented.

1/31/24

Campaign for Preventing Hereditary Cancer

 

February is National Cancer Prevention Month. But preventing cancer isn’t just a one-month effort.

One of the goals of Connect My Variant, a nonprofit organization, is to campaign for increased awareness of the benefits of family outreach among physicians and others who can provide cancer prevention care, as well as the broader genealogy community.

Learn more at www.connectmyvariant.org.

(I created this graphic as a volunteer artist and hereditary cancer prevention advocate.)

1/19/24

Cascade Genetic Testing & Following the Firsts

Do you know who your 1st, 2nd, and 3rd-degree relatives are?

Degrees of separation in the family tree can be confusing. And when that family tree includes individuals that need to be genetically tested because of a family history of cancer, confusion can result in a tragedy.

There are not a lot of visual aids to help explain what Cascade Genetic Testing is and who needs testing. So I created this concept and the artwork to go with it to try and make it easier to understand what cascade testing is and who needs to be tested when a germline mutation is discovered. If information like this had been given to two of my wife’s relatives, I would in all likelihood not be a widower.

Remember, no matter who is being tested, there is always another first-degree relative that might need to be tested as well.

Follow the firsts!

This infographic is available gratis at www.genetionary.org.

1/14/24

Genetic Food for Thought

Having the EXACT SAME PATHOGENIC GENETIC MUTATION passed down over multiple generations -- sometimes centuries -- is obviously a familial issue, NOT an individual one.
 
But changing medical laws that haven’t evolved with genomic science is difficult. So instead, getting families to communicate about family health and cancer history is a big part of my advocacy. In future posts, I will be sharing tools that can be used to help with the sharing of genetic information among genetic relatives. There are cancers that are preventable.
 
Here is the link to the scientific paper at Nature.


1/11/24

Sharing Info about a Genetic Mutation in the Family

 

If genetic testing reveals that you carry a genetic mutation that increases the risk of hereditary cancer, communicating this fact to relatives who might also share the same variant isn’t always the easiest thing to do. But it can be life-saving. Who do you share the information with? How do you share the information? And what information do you include?

I’ve created these two simple tools that can be downloaded from my website, www.genetionary.org, that might help. (And thanks to a certified genetic counselor and really nice person for all the help on the checklist!)

Knowing and sharing family health and cancer history is so important. I should have two previvors* in my family instead of just one. Relatives’ failure to share detailed information about a known BRCA2 mutation in her family robbed my wife of her life. Using these simple tools will go a long way in helping to prevent a similar tragedy.

*Someone who carries a genetic mutation, but doesn’t have cancer.



1/3/24


Go to www.ConnectMyVariant.org and read the personal stories. Beyoncé’s father’s BRCA2 variant story is there. He is speaking up and sharing the importance of understanding your family health history and your family tree. And be sure to read the other powerful stories there of extraordinary love and courage. Knowledge is power. And it can be life-saving.

I created the art and design for this image for Connect My Variant as a volunteer advocate. Unfortunately, I know the unbearable heartache of losing a loved one when relatives fail to connect and share information when there is a genetic variant in the family.