Downey Sisters

The Downey Sisters' Fund for BRCA Mutation Awareness and Education has been established by Phebe and Frederick Downey, to honor their daughters:

Ann Downey Little • Margaret Downey Hardy • Katherine Downey Berges • Martha Downey Lemp

The fund will be used to educate the public and the medical community about the genetic risk of breast and ovarian cancer.

		Donate to the Downey Fund Via Credit Card Donate to the Downey Fund Via Check Please make checks payable to FORCE. Put Downey Sisters' Fund in the memo field. Send checks to: FORCE: Facing Our Risk of Cancer Empowered 16057 Tampa Palms Blvd. W Tampa, FL 33647

"...Learning to Dance in the Rain"
The Downey Sisters Story

In the spring of 2009, the Downey family learned of the BRCA mutations from a cousin related to them through the paternal line. After learning of their cousin’s breast cancer diagnosis and positive test for a BRCA-1 mutation, Fred Downey and then all of his children, four daughters, (Ann Little, Meg Hardy, Kate Berges, and Marti Lemp) were tested for this specific BRCA-1 mutation. All five of them tested positive. Within three months of learning this news, Ann had been diagnosed with breast cancer and Marti with fallopian tube/ovarian cancer. Over the course of the succeeding year, Ann and Marti underwent chemotherapy, and all four sisters underwent multiple prophylactic surgeries. It was an incredibly trying and difficult year – for them, their parents, families, and friends – and it seems like a perfect time for each of them to recap in their own words what has happened and where they are now in their respective journeys.

After many months of chemotherapy and several surgeries, Ann spent her spring recovering physically and emotionally. Her strength has now returned (along with her hair!) and she had a joyful summer with friends and family, spending time at the seashore, in the mountains, by the pool, savoring every minute of that time. Ann recently celebrated the end of this long year by walking in a breast cancer walk with a group of family and friends: "Ann's Little Army." Supporting FORCE continues to be her first priority. She has returned to her job as a Special Education tutor, and has resumed her graduate studies, expecting to finish her M. Ed. in May 2011. Although it was a difficult year, she has been reminded in so many ways of how lucky she is to be surrounded by an amazing support network and excellent physicians.

Meg feels thankful that she did not have to face cancer and chemotherapy. She is appreciative of the knowledge gained from the BRCA genetic testing that led to tough choices. Looking back, she has no doubts whatsoever that the prophylactic surgeries were worth every doctor’s appointment and every minute of recovery time. She snow-shoed within a week of her double mastectomy and kept her Hike-a-Pup pet care business alive. She’s now growing her unique pet care business and this fall started free lance writing for NH Outside magazine. An important physical and psychological goal for her is to get back out to section-hike the Appalachian Trail. Meg asks, “Are there any previvors or survivors out there who would like to join me in a BRCA-empowered group?” If so, contact her at hikeapup@gmail.com, with the theme: “Wheresoever you go, go with all your heart.” - Confucius

Kate also feels very fortunate to have avoided any cancer diagnosis. Her prophylactic surgeries were made more difficult because of her powerful emotions surrounding her sisters' diagnoses as well as worry about the next generation. The stress of it all, and five surgeries in a year, contributed to several unexpected setbacks (a frozen shoulder and shingles, to name a couple). Her fabulous kids, friends, neighbors and family were a source of invaluable strength and love through it all. Kate became passionate about spreading the word on the BRCA genetic mutations: just weeks after surgery she told her personal story to 250 nurse practitioners in Rhode Island and then to a gathering of midwives in CT. At a breast cancer fundraising golf tournament, Kate also shared FORCE information. Women were shocked to hear her story and specifically that the BRCA-1 gene had come from her father. Kate remembers well a wise doctor saying to her a year ago, “‘You’ll look back on all of this in a year and be very happy you did it all.” It was hard to trust those words then, but they turned out to be 100% true! Her angst and worry about the next generation has eased somewhat, seeing how empowering and life-saving knowledge has been for her and her sisters.

After being unexpectedly diagnosed with fallopian tube cancer after a “prophylactic” salpingo-oophorectomy, Marti also became a strong proponent of spreading the message about BRCA mutations. Through her public role as Middle School Principal at the International School of Boston (ISB), Marti was able to educate members of her school community about the mutations. In addition to spreading the word about the paternal link, Marti is also passionate about making sure people understand that the genetic mutations increase the risk for both breast and ovarian cancer. Marti continued to work throughout the year, between surgeries and chemo treatments, partly because she wanted to serve as an example to the Middle School students and partly because the middle school students always lifted her spirits when she returned from an absence. The ISB Middle School Student Council, upon hearing of Marti’s diagnosis last fall, immediately wanted to “raise money for cancer”. At the end of the school year, about four weeks after her prophylactic bilateral mastectomy, the Student Council presented Marti with a check for FORCE: it was a powerful moment and a wonderful end to a difficult year.

At the beginning of this experience, the four sisters shared the quote, “Knowledge is power,” to propel themselves to get tested for the BRCA mutation. Little did they know that this knowledge would lead to such complexities in their lives and that knowledge would feel like more of a nightmare than power! As extremely difficult as it was to make the decision to get tested for the BRCA mutation, the year that followed was filled with even more challenges – processing the knowledge that one had tested positive, facing agonizing health decisions, battling cancer, worrying about those in our next generation who’ll be affected by the mutation, and wondering whether the end of the nightmare is really in sight. But, if the past year has taught them anything, it’s that forcing oneself to face these truths can be a life-saving decision.

The past year has been described as “unimaginable”, “shocking”, “tragic” – choose an adjective. But at the same time it has been “empowering”, “reinforcing”, and “enlightening”. No one would volunteer to have undergone what the Downeys have endured this year, but their choice was not whether to have the BRCA mutation, but in how to respond once learning that they did.

The four sisters and their parents have, each in their own way, responded with courage and compassion - and a remarkable commitment to helping and educating others affected by this scourge. This led to the creation of the Downey Sisters' Fund for BRCA Mutation Awareness and Education by Phebe and Frederick Downey, to honor their daughters. The fund is used to educate the public and the medical community about the genetic risk of both breast and ovarian cancer.

"Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain." ... Anonymous

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