My Faulty Gene

The 12th International Clinical Cancer Genomics Conference sponsored by UChicago Medicine and City of Hope is now a great memory, and I'm already looking forward to next year's conference. As always, I had to snap some pictures with a few friends to memorialize the weekend. Great to see Wenora Johnson, Julie Harrelson Piedrahita, some of the crew from CancerIQ, Thomas Slavin, and Talia Donenberg! I will be making another couple of posts about the conference tomorrow, and a final post as soon as I receive a really special picture from Olufunmilayo (Funmi) Olopade of a "full circle" moment for me that was captured at the 20's-themed Gala on Saturday evening. Because the exhibits were only officially open when the lectures were not in session, I was able to listen to some amazing talks from genetics leaders from all over the world, as well as hear from patient advocates affected by germline mutations. While germline genetics are my passion due to my own mutation, my legal education obviously didn't include genetics--so I loved the opportunity to hear the lectures! One of the lighter moments of the conference came when a leader in the genetic cancer world chatted with me at our exhibit at length before realizing I had no idea who I was talking with. I wasn't red-faced at the time--that didn't happen until I googled the name while on the plane home yesterday afternoon! For those of you wondering about the tree and charms on our exhibit table, we have recently added that to our exhibits as a conversation starter. We ask everyone to take tree of life charms as a reminder of the importance of knowing their family health history--something especially effective at health fairs. I loved it when one provider came up with the idea of creating a tree for her practice and hanging the gene names of the germline mutations their testing is identifying! My Faulty Gene #genetics #germline #knowyourrisk #hereditarycancer #cancerresearch #genomics

First day of #AACR24 exhibits is in the books. Sincerely appreciated My Faulty Gene Advisory Board member, Lee Ellis of MD Anderson Cancer Center, offering to watch the booth so I could take a break! Great catching up with Ricki Fairley of Touch, The Black Breast Cancer Alliance, Chi Long Nguyen of the The University of Chicago Pritzker School of Medicine, and Joan Rush of the Jacqueline Rush Foundation. And a special thanks to Diane M. Hardesty for volunteering to help at My Faulty Gene’s booth once again! Looking forward to continuing with exhibits tomorrow, as well as scheduled meetings. If you are at #AACR24, please stop by. #hereditarycancer #knowyourrisk #germline #geneticcounselor

For our last post during Breast Cancer Awareness Month, we are spotlighting Shannen Doherty--someone all of us in the breast cancer community are following and pulling for as she very publicly faces Stage IV breast cancer. Shannen's encouragement to women since her diagnosis, mastectomy, chemo and radiation in 2015 has been unwavering. She has long encouraged women to get mammograms, to get regular checkups, and "to cut through the fear and face whatever might be in front of you." Shannen has provided frequent updates about her treatment since the recurrence of her disease in 2020, and she recently provided a video on Instagram that was taken just before having surgery to remove a metastatic tumor in her brain. She has also posted videos taken while undergoing radiation for her brain mets. Shannen recently posted, "I am clearly trying to be brave but I am petrified. . . . Worried that I would come out of surgery not me any more. This is what cancer can look like." It has been great to see photos of Shannen out and about over the past couple of months. After returning from trip to Italy with friends in August, Shannen was seen the next month at a 90s Con event where she said, "I have a fight for my life, that I deal with every day. I think I am really great." Working again, Shannen is launching a new podcast in November called "Let's Be Clear," which will be a live interactive memoir. Let's be clear, Shannen! You inspire us daily, and we all wish you all the best!! My Faulty Gene #breastcancerawarenessmonth #breastcancerawareness #breastcancer #brainmets #metastasis #metavivor #metastaticbreastcancer #shannendoherty

When country singer Morgan Wade recently learned she had an increased risk of breast cancer due to an inherited RAD51D mutation, she made the decision to undergo a risk-reducing double mastectomy. Morgan shared on her Instagram account: “To those of you who are upset (I don’t understand why) that I am taking preventative measures—please don’t waste your time. I want a long healthy life. That’s why I’m doing this….I am not excited to be chopping off parts of my body….I am happy to know that after November I will have peace of mind….I am thankful for detecting this now.” With a family history of cancer, including an aunt diagnosed with triple negative breast cancer, Morgan underwent genetic testing to learn if she had inherited the RAD51D mutation shared by her mom and aunt--a mutation that would put her at an increased risk of cancer--and the test was positive. Morgan’s willingness to share publicly about her mutation and upcoming surgery has likely influenced many others to consider genetic testing. As part of Breast Cancer Awareness Month, we encourage anyone with a personal history of breast cancer who has not undergone genetic testing to ask your doctor to order the testing. Your doctor can also refer you to a genetic counselor to provide you with additional information about genetic testing, and to follow up with you once you receive your test results. If you have a family member with a known mutation and you have not yet tested—get tested. Genetic testing could save your life! My Faulty Gene #knowyourrisk #hereditarycancer #previvor #breastcancerawarenessmonth #breastcancer #rad51d #mutation #familyhealth #ovariancancer #genetictesting #genetictestingsaveslives #mastectomy #triplenegativebreastcancer

Excited to participate this morning both as a speaker and as an exhibitor at the Minority Health and Wellness Coalition of East Texas’ Faith Walk in Tyler, Texas. I am ALWAYS ready to share my story and to talk about the importance of knowing your family health history and about the importance of genetic testing! This time tomorrow I will be landing in Ft Lauderdale and preparing to exhibit at Monday’s Cancer Survivorship Summit hosted by Congresswoman Debbie Wasserman Schultz (breast cancer survivor with BRCA2 mutation). The speakers for the one-day Summit include First Lady Jill Biden, Nancy Brinker (founder of Susan G Komen), 2-time cancer survivor Martina Navratilova, and many others. I am honored to also be one of the featured survivor stories being shared by video during the Summit. On Tuesday, I will head to the National Society of Genetic Counselors annual conference in Chicago, where we will once again be exhibiting. If attending, please stop by, say hello, and get a sneak peek at a few of our Family Gene Share videos (coming soon). My Faulty Gene #genetictesting #germline #knowyourrisk #breastcancer #familyhealthhistory #NSGC #healthdisparities

As part of Hereditary Cancer Week, My Faulty Gene hosted its second annual East Texas Previvor Dinner on National Previvor Day, Wednesday, September 27th. I wanted to share a picture of one of the couples that attended--a couple I've met several times over the years as I have chaired local ACS Relay For Life events and Survivor Dinners. They also attended our inaugural dinner last year, and although I knew their names, I never knew their story. Delores has a BRCA2 mutation--something I didn't know until after last year's dinner. She also is a cancer survivor extraordinaire, as a nearly FOURTEEN YEAR SURVIVOR OF PANCREATIC CANCER, with no evidence of disease! In sharing my own story, I always credit my oncologist at Texas Oncology for the role he played in my learning of my own BRCA mutation and how that knowledge was lifesaving for me. Why was I not surprised to learn at Wednesday night's dinner that Dr. Frank Ward was also Delores' oncologist?!? The fact that Delores was in her late 60s did not deter Dr. Ward from pursuing genetic testing for his patient--he understood the potential importance of that information for Delores and her family. As I talked to Delores and Larry and learned that their granddaughter plans to pursue her master's degree in genetic counseling, I was reminded how many people are impacted by our stories. Not only has the identification of Delores' BRCA2 mutation affected her own healthcare, other family members now know they share her mutation, and one will be helping guide countless others as a genetic counselor! It was my great honor to recognize Delores at the dinner and present her with flowers. Her presence was an encouragement to every person present at the dinner who is at an increased risk of pancreatic cancer due to a genetic predisposition! I am also sharing a few other Texas Oncology pictures from the dinner. In addition to many friends from TXO present at the dinner, we were also honored to have Donald Richards, MD, PhD and Heather Pulaski, MD of Texas Oncology as two of our speakers. Congratulations again to Delores--and thank you for inspiring us all! #pancreaticcancer #brca #hereditarycancer #survivor #previvor #genetictesting #genetictestingsaveslives #knowyourrisk #geneticcounselor

All Louisiana employers are now required to provide a one-day leave of absence to employees who need time off work for genetic testing and cancer screening deemed medically necessary. This law is in effect as of August 1, 2023. Learn more: http://ow.ly/qAn9104SzlP