Share Your Hereditary Cancer Story Today

 

A Little Art For Earth Day

Having been born and raised in Arizona, I took for granted that the solitude and wide-open vistas I experienced growing up would always be there. But the wilderness that I loved so much -- what I call the beautiful quiet -- has all but disappeared.

I could share so many stories about the magic and wonder of nature and open spaces, but I’ll just leave you with one of my paintings. 

There’s more about me, my art, and the desert on another post.

DNA, Hereditary Cancer, and Sharing Your Story with the White House

As a hereditary cancer widower and a parent of a BRCA2 previvor, this is my grassroots effort to help prevent other families from losing a loved one to a cancer that could have been prevented. Please join me by sharing your hereditary cancer story with the White House and on social media on DNA Day, April 25th.   

Here is the link:
https://www.whitehouse.gov/cancermoonshot/share-your-story/

Sharing your story and any ideas will help the Cancer Moonshot focus on what will help the most in preventing cancer.

No matter what your political affiliation, please speak up. Nobody should die of a preventable cancer. Nobody!

Connecting Family Trees

 

It's fitting that genealogy should begin with “gene,” because it is genes that truly connect families. Distant genetic relatives may have more in common with you than just a shared ancestor, and that knowledge may help prevent cancer and other diseases. Finding your roots and branching out can be enlightening and sometimes life-saving.

Learn more at www.ConnectMyVariant.org

(Created for CMV as a volunteer hereditary cancer awareness and prevention advocate.)

Zebrafish, Humans, and DNA

With Earth Day (4/22) and DNA Day (4/25) both being in April, I thought I would have a little fun illustrating some natural science for grown-ups like I did professionally for children’s publications for years. And because a lot of people just don’t know peas about genetics.

Also see...

DNA Fun -- The Platypus

  

Of course, it’s far more complicated – there are differences in hox genes, proteins, etc., etc., and etc. But all life is connected, every living thing shares some DNA with every other living thing on Earth.

With Earth Day and DNA Day both being in April, I thought I would have a little fun illustrating science for grown-ups like I did professionally for children’s publications for years. And because a lot of people just don’t know peas about genetics.

Watch for more art and DNA fun over the next few weeks.

BRCA Genes Simplified

aware·ness (ə-ˈwer-nəs) noun  “Conscious knowledge.” Preventing hereditary cancer starts with awareness. Here is my second graphic in what will be a series illustrating the basics of genes and genetic mutations to hopefully help raise awareness about what can be a life-saving subject.

I want to give a big thank you and shout-out to Michelle Springer, a certified genetic counselor, for being my technical reviewer on this project.

You can download a PDF of this infographic at https://genetionary.org/brca/

Again, like my first illustration in the series, I created this infographic with a heavy heart and with the hope that this information might help spare someone a cancer diagnosis. My wife died of a hereditary cancer (TNBC) that was caused by a BRCA2 mutation. Her cancer diagnosis and untimely death could have been prevented. Unfortunately, because of medical privacy laws, information about her family’s germline mutation went unshared for years. Changing laws, no matter how outdated or adverse, can be difficult. So that has led me to use my many years of experience as a professional illustrator to try and raise awareness with my art.

How to Share Genetic Mutation Information

I believe very strongly in the Duty to Warn when there is any danger to the life of another person. And that includes sharing information about genetic mutations and potential cancer risks.

Unfortunately, there are medical privacy laws that hinder the sharing of genetic information among family members. That leaves the task to family members who might be unsure of how to approach other genetic relatives about a difficult and complex subject.

Sharing information about genetic mutations with relatives who may have inherited the same mutation and who may be at risk of cancer can be a complicated task. It is not an “Oh, by the way.” subject. It requires specific information to help relatives make informed choices and to help them to navigate an often-difficult health care system.

I became a hereditary cancer prevention advocate because those who knew about a BRCA2 mutation in my late wife’s family did not openly and honestly talk about it. Tragically, they did not share the specific information that was needed to prevent her hereditary cancer diagnosis and untimely death.

So as an advocate, I have created a page where I have assembled materials that will help with the task of sharing the most important information with those who might be at risk. Breaking the cycle of hereditary cancer in families starts with open and honest communication.

Knowledge is power!

Here is a link to the page: https://genetionary.org/gene_share/

Ending All Hereditary Cancer

ConnectMyVariant.org is an educational health-focused nonprofit organization that supports individuals and families with inherited disease, such as hereditary cancer, with early detection and prevention efforts.

It also works to increase awareness of the benefits of family outreach among physicians and others who provide preventative care, as well as those in the genealogy community.

Every month I will be sharing an image I have created as a volunteer advocate for ConnectMyVariant to help bring attention to the nonprofit's efforts to connect families and save lives.

 

Your Genetic Relatives & Degrees of Separation Simplified

This is something many people struggle with. Granted, it can be confusing, but it is something very important to know when it comes to hereditary diseases, hereditary cancer, and sharing genetic information with your family. These are the relatives to start with when you have important family health history to share.

Keep in mind that the same disease-risk variant may be carried by numerous relatives separated by many degrees over multiple generations. That’s why knowing and sharing family health history is very important. 

A PDF of this graphic can be downloaded at genetionary.org

It is a companion piece to go along with a DNA graphic I created:

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

 

 

Tornadoes, Hereditary Cancer, & the Duty to Warn

 

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

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.)

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.

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.)

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.