Allyn Rose: Mutant enters Miss America Pageant


Allyn Rose
Photo Credit: Courtesy of The Hollywood Gossip

Miss America contestant Allyn Rose, a 24-year old college graduate with movie star looks is so much more than another pretty face. Although she did not make the cut to be a Miss America pageant finalist, her DNA made news around the world. Morning talk shows and tabloids gobbled up her story, eager to label her health dilemma and decisions as controversial. Strong opinions, even hate mail, have followed Ms. Rose in the weeks since she announced her intention to have a prophylactic bilateral mastectomy.

Welcome, Allyn Rose, to the path that anyone with a BRCA1 or BRCA2 genetic mutation knows so well. Our mutations are more famous than your very rare Wiskott-Aldrich syndrome but hey, I am certain those with Cowden’s, Li-Fraumeni, Peutz-Jegher or the host of other known hereditary genetic defects that predispose one to breast cancer will welcome you into the mutant fold. We need you in a big way.

Why do those in the hereditary cancer community need Allyn Rose? It’s simple. There is work to be done to educate people everywhere about the risks and choices involved in familial cancer. Allyn Rose has stepped up to the plate and said to the world she wants to make preventative health care her mission. I applaud her efforts on behalf of those everywhere grappling with the same difficult decisions her family faces.

Thank you Allyn Rose. I am certain your Mom, who died from breast cancer at age 50, and the many generations of women in your family who suffered the same fate, would be so very proud of you.

BRCA Genes and Star Wars Day: May the 4th Be With You

Photo Credit: kalexanderson

“May the force be with you.” A famous movie quote, morphed into the bad pun “May the 4th be with you” and a day to celebrate the iconic “Star Wars” saga was born. If the BRCA genes are part of your world, the word force has another meaning. It is the acronym for the organization Facing Our Risk of Cancer Empowered. FORCE is the only national non-profit organization whose mission is to improve the lives of those affected by hereditary breast and ovarian cancer.

In a crowded room filled with folding chairs were sixteen women who had little in common with one another except for a single issue: genetically inherited cancer. Among them were two sets of mothers and daughters, lesbians and straights, housewives and professionals, survivors and previvors, young and old, white and black. It was as if a movie director had called central casting and requested a perfect cross-section of American women. This gathering was no movie shoot. It was a local FORCE chapter meeting. I know because I was there.

The stories were powerful and as unique as each woman. There was an open exchange of ideas and information. Want to know what it is like to participate in Phase II PARP inhibitor trials? Have post-mastectomy pain syndrome? Battle metastatic ovarian cancer? Maintain privacy in the workplace? Wrangle with insurance companies? These were just a few of the many topics covered in this two-hour meeting.

I came away from the meeting with a few scraps of paper. E-mail addresses of people to follow up with later. I also got a better sense of how FORCE operates on a local level and what resources are available. Perhaps of even greater value was the emotional connection I felt with these strangers. The raw power of their stories, the tangible reminder that I am not alone in navigating these difficult waters. Not to mention the free chocolate. Dark Chocolate with raspberry. Mmmm.

If you are in the BRCA community let the FORCE be with you in more ways than just hunched over a computer screen in the middle of the night, as I often did, seeking information from the FORCE web site. While the value of the FORCE message boards, web site, chat rooms, phone lines and conferences should not be overlooked, they can never replace face-to-face conversations.

Happy Star Wars Day. May the force be with us all.