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  • Mother’s Day in the Mud

    Nancy G. Brinker and her son, Eric Brinker

    Eric Brinker is often referred to as our longest-running volunteer. The son of founder and CEO Nancy G. Brinker, Eric grew up with the breast cancer movement, and went on to become a Komen national board member, global ambassador, and Race chair and board member of the Susan G. Komen Peoria Affiliate.

    Reading recent reports on how Susan G. Komen for the Cure fundraising has been impacted by recent events, I was reminded how far we’ve come, not since January’s Twitter-storm, but since 1977, when newspapers considered the words “breast cancer” unfit to print.

    That year, my 33-year-old Aunt Suzy was diagnosed. Awareness was too little too late. Breast cancer was shrouded in shame and ineffectually treated. Watching her sister suffer and die, my mom, Nancy Brinker, was seared with a sense of purpose that met with her natural talent for research and a passion for patient advocacy that bordered on bulldozer. She promised her sister that breast cancer would be different for women in the future.

    Mom sweated every detail of the first Susan G. Komen Breast Cancer Foundation event in 1982, pinching every penny, calling in favors from years of fundraising for other charities. It was the perfect Dallas lawn party—except for the torrential rain. That morning, Mom slogged through the mud in her pink high heels, sobbing, “I’m sorry, Suzy, I’m sorry.” The money involved was nothing compared to her sorrow at not keeping her promise.

    As Mom’s first volunteer, I grew up with the organization eventually renamed Susan G. Komen for the Cure. (My friends were impressed with the illustrated breast self-exam cards and life-size feel-for-the-lump demo breasts stored in the corner of my room.) Over the years, as Susan G. Komen raised more than $2 billion and rallied 1.7 million volunteers, I saw Mom lifted up by supporters and torn down by detractors. I was by her side when President Obama awarded her the Medal of Freedom and when critics condemned her for 20+ years of Komen funding breast exams at Planned Parenthood clinics for women who often had no other place to go.

    The Nancy Brinker I know is a broad-minded, basically well-behaved Jewish girl from Peoria, who saw something wrong and did something about it. People either love her or hate her because she makes it impossible to sit there with a broken heart and a bucket of excuses. My mom is living proof that every one of us can make a difference.

    That said, she is human, as is the Susan G. Komen staff, I and my fellow board members and everyone involved in this movement. We all make mistakes. Without rehashing the whole Planned Parenthood grant situation, I’ll say we failed to think it through. Accustomed to triaging breast cancer, not PR debacles, we stumbled. Viral response rapidly morphed into a pandemic of misinformation.

    She apologized. We apologized. Most of the credit for the wealth of good will we’ve enjoyed over the years belongs to our local affiliates, on-the-ground volunteers and generous corporate sponsors. We won’t let them down again. On a personal note, I’d also like to tell my mom that I’m sorry I failed to get between her and the oncoming freight train.

    For years, the public perception was breast cancer + pink = good, but the complexity of this organization—and the disease itself—was never fully understood. What matters now is the opportunity to bring people back with more information and, hopefully, a greater sense of urgency.

    Not everyone will hear us. Responding to bloggers who misrepresent our research spending is as futile as responding to snark about Mom’s big hair. What matters is transparency. We’re making changes, including additional board representation from local Affiliates, and we welcome anyone who wants the real facts about how we manage to reach around the world with no government funding, funding the most breast cancer research of any non-profit, and helping hundreds of thousands of women every year.

    Rumors abounded that I was forced to give up my board seat. In fact, I stepped aside after my term ended, to make room for an additional Affiliate.

    Our leaders and volunteers are galvanized with the same purpose—usually for the same reasons—as my mom, who not only lost her sister to breast cancer, she lost her breasts. She survived a mastectomy and chemotherapy; mudslinging doesn’t quite compare.

    Back in 1982, standing in the rain with her big hair deflating, Mom saw a car pull into the parking lot, followed by another and another. At the end of the day, the mud didn’t matter. Our community understood the need and rallied to help.

    30 years later, in the aftermath of controversy, we’re seeing some impact in revenues in some parts of the country. But as our Mother’s Day Races approach, we’re seeing our communities rally to help. We appreciate those thousands of moms, dads, daughters, sons, sisters and brothers who are continuing to support us, because thousands more are depending on Komen every day to find a cure for breast cancer, and help those who suffer with it today.

    Happy Mother’s Day, Mom. Together, we’ll weather the storm.

  • Susan G. Komen: Making an Impact in Israel

    This year, more than 4,000 women and men are expected to be diagnosed with breast cancer in Israel. We are working with NA’AMAT and the Jerusalem Municipality on the ground in Israel, uniting people of all nationalities and religions together against this disease.  We are so excited to join the women and families who will take to the streets for the second time to raise funds and awareness of breast cancer in the 2012 Susan G. Komen Israel Race for the Cure in Jerusalem on May 3.

    Since 2010, we have given $3 million to organizations in Israel including the Weizmann Institute of Science, Hebrew University-Hadassah Hospital in Jerusalem and NGO’s such as Naamat, Beit Natan, The Galilee Society, NISPED, the Israel Cancer Association and others. 100% of the funds raised through the Israel Race for the Cure will stay in Israel to support programs that address breast cancer and women’s health needs.

    In Israel, breast cancer accounts for nearly 30% of all new cancer cases, with 1,000 women and men expected to die of the disease this year. As we prepare for this year’s Israel Race for the Cure, we are especially focused on reaching out to Arab, Ethiopian and Russian women, and ultra-orthodox women living in Israel – all of whom can face economic or cultural barriers to early detection and breast health care. We want all women in Israel to know that they are welcome to walk with us.

    Help us fight breast cancer in Israel and walk with us on May 3, 2012! If you can’t make it, you can still virtually join us by registering as a VIP – Virtual Israel Participant!

    For more information, please visit http://www.komen.org/israel

     

     

     

     

     

     

     

     

     

     

     

  • Susan G. Komen and Uzbekistan

    There’s chatter online today about us and our work in Uzbekistan. Our partnership is with the National Breast Cancer Association of Uzbekistan, a well-regarded NGO endorsed by the United Nations, the U.S. National Cancer Institute and through work done at the Seattle Cancer Care Institute. NBCA has been working since 2009 to provide breast cancer education, screening and treatment in Uzbekistan, where breast cancer kills about 1,000 women annually. Our participation is to help with an upcoming Race benefitting breast cancer programs in Uzbekistan.

    We partner in more than 50 countries worldwide to erase the stigma of breast cancer that still exists in some countries, and to provide early screening and treatment for women who have few or no options today.  Our work takes us to the Middle East, Africa, central Europe, Asia and Latin America, and to date, we have invested more than $44 million to these outreach programs and in research with global institutions.

    If you have further questions, please contact us at news[at]komen[.]org.

  • Old Drug, New Research

    The scientists who “invented” tamoxifen back in the 1960s were actually trying to develop a contraceptive. As the story goes, it worked in laboratory rats, but had the opposite effect in women. Instead of becoming a birth control pill or fertility treatment, the drug became one of the most widely used breast cancer therapies, thanks to a young chemist from England, Dr. V. Craig Jordan.

    Doctors began prescribing tamoxifen in the 1970s, and even today, it remains a mainstay in the treatment of breast cancer. Meanwhile, Dr. Jordan has dedicated his career to discovering and improving therapies for estrogen-sensitive breast cancer.  A recent story about him estimates that one million women worldwide are alive today because of his research. And countless other women were able to live long, productive lives, ultimately dying of old age instead of breast cancer.

    As cancer drugs go, tamoxifen is inexpensive (the patent on tamoxifen expired almost 10 years ago). It’s an oral drug, so it’s easy to administer. It’s also very effective, though there are other options that may be equally or more effective. Scientists and physicians continue to study the drug because it is an important weapon in the treatment of breast cancer around the globe, and advances in modern technology are allowing them to learn new things about old drugs.

    Since 2003, tamoxifen research has focused on a gene called CYP2D6 (pronounced sip-2-D-6), which helps the body metabolize tamoxifen and convert it into an active agent against breast cancer. A few studies suggested that some women didn’t fully metabolize tamoxifen because of differences in their CYP2D6 genes, thus raising concerns that the drug was not effective against their breast cancers. Some doctors began ordering CYP2D6 tests before prescribing tamoxifen, presumably changing their treatment recommendation if a woman’s test showed she was one who didn’t fully metabolize the drug.

    There also seemed to be a correlation between hot flashes and CYP2D6, leading us to believe that if a woman wasn’t experiencing hot flashes, then the drug wasn’t working. And women who had hot flashes were reassured that the tamoxifen was doing its job.

    Fortunately, some researchers argued that we didn’t yet know enough about CYP2D6 to be making treatment decisions. In 2008, Susan G. Komen for the Cure awarded a Promise Grant to a group of these researchers so they could delve further into this question (results of this study were just published in the Journal of the National Cancer Institute; Volume 104 Issue 6 March 21, 2012). By analyzing the DNA of breast cancer tumors from women who had received tamoxifen, the researchers were able to prove that differences in CYP2D6 did not predict who would or would not benefit from taking tamoxifen. They also showed that hot flashes didn’t correlate to differences in CYP2D6.

    This might not sound like an important discovery, but it is. For one, women and their doctors won’t be making a treatment decision based on erroneous information, nor will doctors be ordering expensive tests that are unnecessary. It also highlights the importance of clinical trials and tissue banking. The women whose tumors were studied had participated in a large treatment trial, and had agreed to let the researchers collect tissue from their breast cancer tumors. Had the women not agreed to this, the scientists would not have been able to analyze the tumors and compare their findings with treatment outcomes for these women. We must continue to support this kind of research because studies like this will help us realize the promise of personalized medicine.

    For those interested in more details about this Komen Promise Grant, please read a great summary written by my colleague, Stephanie Reffey, PhD.

  • Indy’s Super Cure – Komen Tissue Bank Collection

    Kendall Bergman donating healthy breast tissue

    Photo Credit: Office of Visual Media/IU School of Medicine

    Guest post from Kendall Bergman, Program Manager, Scientific Programs at Susan G. Komen for the Cure

    After managing Komen’s grant to the Susan G. Komen for the Cure® Tissue Bank at IU Simon Cancer Center beginning in 2007 with an initial award of $1M and increasing to $7M to date, I have to confess I feel at a loss for words to accurately and effectively describe to you my experience this past weekend as I attended, participated in and volunteered at the Komen Tissue Bank’s two day collection as part of its Super Cure activities leading up to Super Bowl Sunday, February 5. For a point of reference you might find it interesting to know that the tissue bank has never collected more than 150 core biopsies in one day. However, this weekend they lived up to the challenge of collecting close to 700 specimens over two days. More than 600 volunteers showed up, including surgeons, nurses, survivors, family members, women, men, and young people. During volunteer sign-up, the tissue bank staff had to let some of those interested know they weren’t needed. Women showed up to donate their tissue by the droves. I count myself lucky to be part of that donor crowd now. My normal tissue was taken on Saturday, January 28 and I honestly have to say it was one of the most meaningful experiences of my life. I was emotional afterward and stayed pretty much on the verge of tears all day.

    I wish you could have been there with me to see the volunteers walking the donors throughout the process beginning with the consent process, progressing to leaving a few vials of blood, and culminating with the actual tissue removal. I wish you could have seen the faces of the women as they walked out of the examining room to encounter a hall full of volunteers clapping and cheering for them. I wish you knew Sue Clare, Anna Maria Storniolo, Connie Rufenbarger, Jill Henry and the entire tissue bank staff. Their apparent limitless passion, energy and perseverance is inspiring, humbling and compelling. Over the past few days I continue to comprehend that one day it’s quite possible a scientist in Bosnia or Norway or Ghana may one day need a normal tissue specimen and will be able to access mine virtually…in order to complete his or her research and move all us closer to a world without breast cancer.

    Tears immediately come to my eyes all over again and I find words don’t suffice. The experience was akin to summer camp. Remember what it’s like at the end of camp? You’ve gotten to know these other kids and the counselors and they’ve become this make-shift family that you don’t want to say good-bye to and at some level you know you’re never going to be the same again. This weekend in Indianapolis I became reconnected with old friends, made new friends and know that I am forever altered…for the better. I am beyond grateful for the opportunity afforded me through my work at Komen. As the saying goes, I wouldn’t trade my experience for all the tea in China.

    To read more about the Komen Tissue Bank and our relationship with it, please visit here. For more information on the tissue bank’s relationship with the Super Bowl and all of the Super Cure activities, please visit here. To read about Indy’s Super Cure wrap-up the IU Simon Cancer Center Web site, please visit here.