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  • “Popping Up” around Town to Offer Free Breast Health Services

    By: Komen Northwest Louisiana Mission Coordinator Kelley Matkins

    Every two years, Komen Northwest Louisiana travels across our ten parish (county) service area to conduct our Community Profile – the way that we assess how we can best serve our community. Earlier this year, we saw a tremendous need that was not being met:  lack of both breast health education and awareness of free breast cancer screenings.

    Working with three of our local grantees, the Komen Northwest Louisiana team set out to brainstorm a new way to provide better outreach, visibility and impact of local services throughout 2015. Through the collaboration and creativity of our grantees, the “Pop Up” concept was born, and four priority areas were identified: Ringgold, Mansfield, Springhill and Minden, Louisiana.

    The idea was to “pop up” in a targeted priority community at a high visibility location, such as a grocery store or discount store, and provide a quick and convenient place to share breast cancer education, and offer clinical breast exams and mammograms.

    The idea was simple in nature, but would not have been possible without the support of our grantees, including Partners in Wellness Mobile Mammography Unit (PIW), St. Luke’s Episcopal Mobile Medical Ministry and Martin Luther King Health Center. We also engaged local businesses to get the word out, enlisting the help of business staff to encourage customers, friends and family members who do not have health coverage and those who had questions about breast cancer awareness to stop by the Pop Up and take advantage of the services Komen funds locally.

    Beginning with the first Pop Up in Ringgold, LA, held in the parking lot near a grocery store, we could see the impact of these events firsthand. It was so encouraging to walk into a dry cleaners or café and see faces light up as we spoke to the staff about what Komen Northwest Louisiana does, or how they (or their friends/family members!) can benefit from the services our community grantees provide.

    Komen Northwest Louisiana Executive Director Lindsay Dean was equally excited, sharing, “These Pop Ups are a great way to not only showcase how fundraising directly benefits the local community, but it also helps people in these high priority areas put a face to the Komen Northwest Louisiana name.”

    We knew that we were covering new ground with these Pop Up events, and our first Pop Up wasn’t without a few hiccups. But, we were able to apply what we learned to our second stop, in Mansfield, LA. Thanks to our refreshed approach and a beautiful sunny day, more than 30 women received free breast cancer screenings that day.

    The effects of these events go beyond screening tests, too. In just two short months, our team has noticed a positive change in the public’s perception of breast cancer, with many individuals being more open to discussing their personal experiences with breast cancer.

    Throughout 2015, we plan to schedule one Pop Up a month, rotating our stops in each of the four priority areas identified through our 2015 Community Profile. In doing so, we will visit each area three times throughout the year.

    Our team has been so inspired what collaboration and creativity can do for a community. Thank you to each of the individuals involved in making these Pop Ups possible! We are pleased to have another opportunity to serve our neighbors throughout the year.

    For more information about what’s going on in your area, click here to find your local Komen Affiliate and see how you can get involved!

     

  • One Tissue Donation, Twenty Samples and Endless Possibilities for Breast Cancer Research

    By Jill Elaine Henry, COO of the Komen Tissue Bank

    In order to recognize something as “abnormal,” you first have to know what is normal. It’s like when you notice that you have a runny nose or a sore throat, and wonder if you’ve caught a cold.

    We know cancer cells are abnormal because they don’t act like normal cells. They are invasive, they evade our immune system, and they spread (or metastasize). So, in order to target and stop breast cancer cells dead in their tracks, researchers first have to understand what exactly makes breast cancer cells different from normal breast cells. And to determine that, they need healthy, disease-free breast tissue.

    The Susan G. Komen Tissue Bank at the IU Simon Cancer Center is the only known repository for healthy breast tissue in the world. We rely on tissue donations from generous women who want to make a very personal contribution to breast cancer research.

    Each time a woman donates tissue, she is making it possible to create 20 or more individual samples (a collection of blood, serum, plasma and breast tissue) that can be used by researchers. This support is so vital because each year we receive requests from researchers around the world in need of these samples.

    The quantity of samples needed can vary from as little as three to as many as 1,000. Additionally, studies often have specific needs, such as only tissue from African-American women or only blood from women who have recently entered menopause. And, just like other resources, it will run out if not replenished. We need help to ensure that these samples are available, and researchers have the tools they need.

    Our neighbors here in Indiana have been nothing short of amazing supporters over the years, but, in order to reach a more diverse population (and get a wider array of samples), sometimes we take the Tissue Bank on the road. Most recently: to Houston, TX.

    Hosting a remote tissue collection event is no easy task, so we were grateful to have the support of Komen Houston, Baylor College of Medicine and lots of local volunteers. We took over the Baylor facility for a day, and worked with community organizations to encourage women of Latina/Hispanic and Asian backgrounds to donate tissue. By the end of the day, samples were collected from more than 160 women.

    I’m excited to share that we’ll be heading to Detroit in 2016 for another tissue collection event. I’m looking forward to meeting the dedicated women in that community as well.

    Wise words tell us, “do something today that your future self will thank you for.” What about something that future generations will thank you for? It may have been just a tissue sample, but these women have made an impact for years to come.

    Any donation – whether it’s money, tissue or time – brings us one step closer to a world without breast cancer. A special thanks to each of you for being a part of this important work.

    If you have questions about the Komen Tissue Bank, the tissue collection process or anything else, check out our website for more information. You can also take a look at all of the studies that have used donated tissue samples to make progress against this disease.

  • Dethroning “The Emperor of All Maladies”

    The following blog appeared in The Huffington Post on March 26, 2015.

    We are standing at an extraordinary moment. For nearly 4,000 years of recorded history, cancer in all its forms was an implacable foe. Doctors, patients, and researchers won incremental victories, but for millennia, the word “cancer” was too dreadful to speak aloud. Now each day brings remarkable progress in unlocking, and defeating, the code of cancerous cells.

    That rapid advancements have been made against cancer in a tiny sliver of time is made clear in a landmark documentary by Ken Burns and Barak Goodman, Cancer: The Emperor of All Maladies.

    Based on the Pulitzer Prize-winning book by oncologist Dr. Siddhartha Mukherjee, the film, which airs on PBS on three consecutive nights starting March 30, charts the past, present, and future of cancer from 2500 BC to the genomics and precision medicine that are revolutionizing detection and treatment in 2015.
    It’s “must viewing”–after all, one in three Americans is touched by cancer– and everyone involved in bringing this film to PBS has earned the gratitude of Susan G. Komen. That includes a number of our allies in the effort against cancer, such as Stand Up To Cancer, the American Association for Cancer Research, and the American Cancer Society.

    But while it’s vital viewing, it’s not always easy viewing. Dr. Vincent DaVita, formerly of the National Cancer Institute, recounts that, “When I was growing up, I had an aunt who developed cancer and she was hidden away in the attic. People were ashamed when they had it.” Dr. Jimmie Holland of Memorial Sloan Kettering Hospital recalls what instructors said to her in medical school in the early 1950s: “We were told you don’t tell patients they have cancer, because it would be cruel to do so.” In other words, don’t deliver a death sentence.

    Of course, cancer wasn’t always fatal in the mid-20th Century, but successful treatments were often horrific and disfiguring. Susan G. Komen’s founder Nancy Brinker has spoken movingly of visiting her Aunt Rose decades ago following a Halsted mastectomy for breast cancer. The teenaged Nancy and her sister Susan accidentally caught a glimpse of the hollowed out and “startling remnant” of her aunt’s chest. It was concave and burned bluish purple by high-voltage cobalt treatments.

    Neither sister ever forgot that sight, but with the prevailing mores about cancer–and breast cancer in particular–they kept this intensely personal experience to themselves. With the passing years, public attitudes changed and cancer moved out of the shadows.

    So when Susan Komen died of breast cancer in 1980, her sister Nancy launched our organization. In the decades since, progress against breast cancer–and cancer in all its forms–has been dramatic. As Dr. Mukherjee notes in the film, “We are finally beginning to understand what causes cancer at a cellular, molecular, or genetic level in a way we didn’t understand 10 years ago, or even five years ago.”

    Today, knowledge about a specific genetic mutation allows some women to take steps to actually prevent breast cancer from developing. And if it does, there are treatment options that were unimaginable in 1980. Those options are the result of years of research into new therapies, biomarkers, environmental causes, and more. We are proud of the role Susan G. Komen has played in these advances through research funding.

    But a cloud hangs over our advances. While survival rates for many forms of cancer–and including breast cancer–are up, federal funding for research has remained relatively flat for the past 10 years, resulting in real-dollar funding cuts of 20 to 25 percent. To achieve even greater progress, we as a nation must commit to funding the work of the best minds in cancer research. At Susan G. Komen, more than half of our 2015 research portfolio will go to early career scientists who might otherwise be forced from the profession for lack of funding.

    We must provide the funding to keep the next generation of researchers in the field, because cancer, in all its forms, never sleeps. As Dr. Mukherjee has said, “Down to their innate molecular core, cancer cells are hyperactive, survival-endowed, scrappy, fecund, inventive copies of ourselves.”

    If we are ever to dethrone “the emperor of all maladies” we must be more hyperactive and inventive than cancer itself.

  • An App for That: Game-Changer for Breast Cancer Patients

    The following blog appeared in The Huffington Post on March 9, 2015.

    One of the most remarkable qualities of the breast cancer community is its willingness to help others who are facing the disease today or might in the future. Millions of people in our community now have the opportunity to do that, and in my view, it’s a game-changer.

    The app I’m referring to, introduced today at the Apple Spring Forward event, has a fairly long name: Share the Journey: Mind, Body and Wellness after Breast Cancer Treatment. But it has a very simple goal: to help millions of people understand and manage effects of their breast cancer treatment, while contributing to a body of knowledge that can smooth the journeys of those to follow.

    Like so many groundbreaking developments in science, this app started with a simple observation. Dr. Andrew Trister, a Seattle radiation oncologist, often treated breast cancer patients who told him they were experiencing confusing symptoms after completion of their treatments. Many were having trouble sleeping, experiencing mood swings, fatigue and cognitive problems. In numerous cases, these symptoms were affecting their ability to work or care for their families.

    They also told him they felt out on a ledge, without support. And since there were few good, large studies that addressed these specific issues, many physicians felt (and still feel) unequipped to help their patients in meaningful ways.

    Dr. Trister saw the opportunity to change the story for women and men with breast cancer. He reached out to Dr. Stephen Friend, president of Sage Bionetworks, a Seattle-based nonprofit biomedical research organization, who also wanted to help. And the Share the Journey app was born.

    With funding from the Robert Wood Johnson Foundation, Friend and Trister enlisted the expertise of nationally recognized cancer researchers: Dr. Patricia Ganz of UCLA, Dr. Ann Partridge of Dana-Farber (both members of our Komen Scholars advisory panel), and exercise expert Kathryn Schmitz, Ph.D., MPH, of the University of Pennsylvania.

    These experts also worked with Dr. Susan Love (who with Komen and the Young Survival Coalition introduced the Health of Women Study (HOW) in 2013 to track people after treatment), and Dr. Judy Garber of Dana-Farber, another of our Komen Scholars.

    I mention the Komen connection because we’re very proud that we’ve been asked to help spread the word and enlist participation in the HOW study and this one – along with many of our partners in the Metastatic Breast Cancer Alliance: breastcancer.org, the Avon Foundation for Women, and the Dr. Susan Love Research Foundation.

    To that end, I’m asking our community to download – and use – the Share the Journey app, available in the iTunes store at this link.

    When you do, you’ll be encouraged to keep a personal diary and use the app to track five of the most common after-effects of breast cancer treatment: fatigue, sleep issues, cognitive issues, mood and exercise.

    Data from the app can be collected, in a completely confidential way, for important studies that will give researchers the information they need to identify patterns and make recommendations on how we can ease the after-effects of breast cancer treatments.

    The benefits are two-fold: By keeping a consistent diary, you may see patterns that you might not have noticed before. You may find out, for example, that on days you do yoga, you feel better. Or on days when you don’t exercise, you feel fatigued. This information can help you set personal goals and strategies that can improve your well-being.

    Of course, the potential benefits to medical science are huge. When we can get a very large global community of women reporting their symptoms, we can get a better understanding of what women actually go through after treatments. This gives us better insights into what’s causing these symptoms, and will help develop recommendations – based on scientific evidence – to improve quality of life.

    I’ve long been an advocate for the use of data carefully obtained from patients to help solve important issues in medical science. My hope is that the collaboration of breast cancer organizations, and the input of millions of women and men in our community, will lead to better, targeted, “person-centered” care for breast cancer patients, even as we continue to fund medical research for better treatments, cures and prevention of this disease.

    This is an opportunity for anyone experiencing symptoms – and even those who are not – to do something for themselves, and help others.

    Share the Journey is open to women in the U.S. between the ages of 18 and 80, with or without a history of breast cancer. A Spanish-language version of the app and efforts to expand the study to additional areas around the world are under development. Sage Bionetworks and its collaborators are also working to extend the study to include men who have been treated for breast cancer.

    Read more about Share the Journey.

  • Picture It. I Dare You.

    On March 8, International Women’s Day, the hue and cry for gender equity and a better life for girls and women galvanizes around the theme, “Empowering Women—Empowering Humanity: Picture It!” with the United Nations aiming to “mobilize all people to do their part.” When it comes to mobilizing for change, no one moves more nimbly and purposefully than the American nonprofits that first pictured today’s global breast cancer awareness movement.

    I stepped into this charitable world more than 30 years ago with a promise to my dying sister to end breast cancer. I had no idea how even to begin to create such a change. Over the years, by listening to other women’s stories and connecting their power and passion with the larger community, we built Susan G. Komen into the world’s largest nonprofit source of funding in the fight against breast cancer. As we grew, the nonprofit sector as a whole became an extraordinary force for transformation. Democratization of good ignited a passionate civic evolution. Now is not the time to let that evolution slow.

    The future I see for empowering humanity this International Women’s Day is reflected in the faces of three young mothers with late-stage breast cancer whom I met not long ago in Tanzania’s Ocean Road Cancer Institute. They had overcome great barriers of stigma, transportation and cost—only to arrive at the clinic in advanced stages of the disease—too late. Today, we are expanding education about breast cancer in Tanzania thanks to the clarion voices of a generation of women and their families who lived and fought the disease.

    In its first year alone, Pink Ribbon Red Ribbon screened 27,000 women, identified 5,000 pre-cancerous lesions and referred more than half of those for diagnosis and treatment. Yet, in Tanzania and much of Sub-Saharan Africa, more than 90 percent of women who finally seek treatment are diagnosed in late stages and are unlikely to survive the disease. This is not the time to be satisfied with early achievements.

    We must picture a world where bold, groundbreaking scientific research moves quickly from bench to bedside to provide better treatment options for women with advanced cancer and metastatic disease. Where we find gaps in research and treatment, we must work harder to fill them. Today’s ever-constricting budgets at the National Institutes of Health and other government funders tend to favor established laboratories, leaving so much promising research unfunded. The average age of an NIH researcher has risen from 39 to 51 since 1982. This is why Susan G. Komen devoted half of its 2014 funding to early career researchers, with a goal to increase that funding by 30 percent in 2015, while continuing to fund the work of well-known scientists and labs. Now is not the time to leave our brightest, young scientific minds struggling for support.

    This International Women’s Day I dare you to join with me in thinking big, in picturing a world where all women have access to the health care education and services they need. Together, we must dare to find and fund innovative, game-changing scientific research that makes life-saving treatments a reality for women in every corner of the world, and we must dare to envision bold, new global nonprofit collaborations—across sectors and among former competitors—to ensure that women everywhere are empowered in the fight against breast cancer.

    The faces of those three young mothers in Tanzania and the motherless children of our own here at home are the reason we fight for a world without breast cancer. Picture it. I dare you.