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  • Chris Tannous…Queen of Advocacy and Hearts

    Blog by  Cheryl Jernigan, a Komen Scientific Advisory Board and Advocates in Science Steering Committee Member

    Sunday May 17, we received heart-breaking news. Our long-standing friend and colleague, Chris Tannous, passed away. Although a two-time breast cancer survivor, it was not breast cancer that took Chris’ life, but pulmonary fibrosis.

    Chris was simply the Jackie-of-all-advocacy-trades. There wasn’t an avenue, if even only slightly open, she didn’t explore in her quest to put an end to breast cancer. Not only was she a Komen advocate phenomenon, she diligently pursued her quest across many organizations, including the American Cancer Society (ACS), Y-ME and the National Breast Cancer Coalition.

    Chris’ legacy in Komen is wide and deep. Her wisdom, guidance and thoughtful work were evident at the Affiliate level, and in our global and research programs.  She was passionate about including the patient voice in breast cancer research, pioneering patient-focused efforts on our Scientific Advisory Board (SAB) and helping found Komen’s Advocates in Science (AIS).

    From the beginning, she skillfully exercised her advocacy and leadership skills, serving as a role model for many and leaving no stone unturned.  She was a volunteer and leader locally, regionally, nationally and internationally.  She rolled up her sleeves and did whatever it took to get the job done!

    Chris was intimately involved with Komen Orange County as a volunteer, board member, President and other leadership roles. The too-numerous-to-mention awards bestowed upon her over the years pay tribute to the substantial and inspiring impact she had within her Affiliate and her community.

    Chris Tannous with a delegation from the Breast Cancer Network Japan – Akebono-kai at the 2010 ASCO Annual Meeting.

    On the global front, Chris was one of our U.S. delegates to the 2007 Global Breast Cancer Initiative and Global Breast Cancer Advocacy Summit in Budapest, Hungary. In 2010, she participated in a roundtable discussion convened at the American Society of Clinical Oncology’s Annual Meeting to share best practices in patient services, outreach and education with the Breast Cancer Network Japan – Akebono-kai.

    She was also an advocate and co-author on a study that demonstrated a substantial difference in breast cancer risk factors and Gail scores (a commonly used tool to assess a person’s breast cancer risk) between Hispanics and non-Hispanic whites, and suggested different screening and prevention strategies to more effectively reduce or manage risk within each of these populations.

    Far from seeking the limelight, Chris just humbly and diligently pursued her passion to make a difference for breast cancer patients today…and tomorrow. Working with her was an absolute delight. Memories of her bright smile and unpretentious, dry sense of humor still bring a warm smile to many hearts.

    Her gift to quietly listen and understand others’ perspectives, unwittingly endeared most to her.  When she did speak, you knew her comments would be well reasoned and to the point.

    Although physically gone, Chris, you will never leave our hearts and minds. Your dedicated work and caring friendship remain an inspiration to many. And your legacy as a dedicated, collaboratively assertive pioneer in breast cancer research advocacy has laid a solid foundation for research and patient advocates to build upon in our work with researchers and clinicians to improve how patients feel, function and survive.

    Thank you, Chris! You have been a wonderful blessing to our world.

  • The ‘Omics’ and the Future of Cancer Research

    The following blog appeared in The Huffington Post on May 21, 2015.

    In 2014 Congress declared May as National Cancer Research Month to recognize innovative work being done to find cures for cancer in all its forms.

    Perhaps some of the most innovative work in the field being done today centers around genomics and related fields such as proteomics. They have given researchers new ways to understand susceptibility to cancer — especially breast cancer — and therefore new targets for treatment. Knowing how critical this work can be to ending breast cancer once and for all, Susan G. Komen has funded millions in research solely focused on identifying new genetic mutations in inherited breast cancer.

    We were proud to see our investment in breast cancer research pay dividends, as it did on April 27 when a study published in Nature Genetics reported the discovery of a new breast cancer susceptibility gene called RECQL. The study was led by Dr. Mohammad Akbari at the University of Toronto and Cezary Cybulski at Poland’s Pomeranian University. They were supported by important contributions from Susan G. Komen Scholar Dr. William Foulkes of McGill University in Montreal, who provided convincing data showing that RECQL is a breast cancer susceptibility gene.

    Once RECQL was identified, researchers analyzed genetic data from French-Canadian and Polish women who had been diagnosed with breast cancer, had a strong family history of cancer and/or a young age of onset, and lacked mutations in the BRCA1 and BRCA2 genes. Researchers concluded that the group was more likely to carry the RECQL gene mutation than a control group. In all, more than 25,000 women participated in the study. By working within two specific nationalities, the RECQL study can serve to spur further population-based research, which may, in turn, lead to the identification of additional genetic mutations.

    This is critically important, because breast cancer susceptibility genes and their associated mutations are difficult to identify. The hard work of discovering these genes must keep moving forward, because all the mutations in breast cancer susceptibility genes currently known account for only half of all inherited breast cancer risks.

    The knowledge gained by research must of course be shared with the public so that women (and men) can work with their healthcare providers to manage their risks and, if needed, take action.

    That’s why we were also excited in April to see Color Genomics join the ranks of researchers and companies working on an affordable genetic screening test for breast and ovarian cancer that requires only a sample of saliva to detect the presence of 19 cancer-risk genes, including BRCA1 and BRCA2.

    We are hopeful that these kinds of tests can be offered at low cost to eliminate financial barriers and expand access for women.

    But as we add to the store of available knowledge about breast cancer risk, it’s important to remember that this knowledge must be assessed carefully. Not all of the 19 cancer-risk genes identified to date pose the same level of threat. Genetic testing must be coupled with genetic counseling to help women understand their risks.

    The BRCA1 mutation is especially important to identify, as its carriers have a 55- to 65-percent chance of developing breast cancer by age 70 and are at higher risk for developing triple negative breast cancer, an aggressive form of the disease. On the other hand, many of the other cancer-risk genes pose a lower risk, which means a carrier of a specific gene might have a 20-percent greater chance of developing breast cancer.

    As new risk factor genes are identified, and as genetic testing for breast cancer risk becomes more accessible, that testing must be approached with the understanding that it empowers women to weigh their personal risks objectively and consult with their medical provider about possible courses of action.

    Our course of action is clear. As a nation, we must continue to support the work of researchers who are unlocking the genetic keys to breast cancer. Their efforts bring us ever closer, every day, to finding better treatments and cures.

  • Komen’s Commitment to the Patient Voice in Research Applications

    As funding for medical research continues to decline in real dollars, Komen is focused on ensuring that the best and brightest researchers in the world are working towards finding a cure for breast cancer. We want young scientists at crucial, early points in their careers, to have the resources they need to stay committed to their breast cancer research.

    Including the patient voice in our funded research is another important part of Komen’s commitment to finding the cures. We have always encouraged our applicants to collaborate with patient advocates, but beginning this year, patient advocate involvement will be required in the grant proposal.

    This is so important, because many patient advocates, like members of our Advocates in Science program, are survivors and patients currently undergoing treatment. They put a face to the ultimate goal of ending breast cancer, and help researchers focus on what’s important to patients much earlier in the research process.

    For example, patient advocates may remind investigators to consider treatment side effects and other quality of life factors, like travel, that can keep women and men from following through on their recommended course of treatment. They help keep key

    Advocates in Science Steering Committee:
    Sandra Finestone, Patty Spears, Karen Durham, Cheryl Jernigan, Peggy Johnson, Judy Johnson and Kimberly Wright (right).

    questions fresh in scientist’s minds: How will my work specifically help breast cancer patients? Can I explain my long term research goals and how they impact patients both now and in the future? Is what we are asking patients to do in a clinical trial reasonable or just too much?

    Patient advocates bring a unique point of view to researchers and their projects, and their stories inspire us and push us to work harder, and do better each day, to achieve our mission to end breast cancer. By asking our Young/Early Career applicants to work with Patient Advocates at this stage in their career, we hope to help build lasting relationships, encourage new ideas and approaches, and give young scientists more resources to succeed.

    Are you a researcher looking for a Patient Advocate? Komen has amazing, trained breast cancer Patient Advocates who are willing and able to work with researchers when needed.

    Are you interested in becoming a Patient Advocate to assist researchers with their efforts? For assistance in identifying trained advocates for your application or to apply to become a member of Advocates in Science, contact advocatesinscience@komen.org.

    Thank you to our Supporters! These research grants are made possible in part through fundraising efforts, such as the Race for the Cure, at local Komen Affiliates across the US.  If you’ve participated in a Komen Fundraising Event, you’ve directly helped to fund breast cancer research opportunities such as these.

    If you’re interested in learning more about Komen’s research portfolio, check out our Research Fast Facts, which can give you information about specific areas in breast cancer research, and our Research World Map, which breaks out Komen’s research investments across the world – and maybe even in your own backyard.

    We are now accepting new applications for research funding opportunities!

    Early career breast cancer researchers anywhere in the world are invited to apply.

    Learn more about our Requests for Applications (RFAs) at www.komen.org/rfa

    Scientists are invited to apply at https://proposalcentral.altum.com/ by June 17, 2015 at 1pm EST.

  • People Think It’s “Life As Usual” after Breast Cancer. But It’s Not.

    By Cati Stone, Survivor and Executive Director of Komen Greater Atlanta

    A survivor recently told me, “People think it’s ‘life as usual’ after cancer, but it’s not.” And she’s right! As a five-year breast cancer survivor myself, I understand how nothing seems “usual” after a breast cancer diagnosis.

    My own treatment took a year and a half to complete, and I was changed as a result. Facing a diagnosis and undergoing treatment is hard. And when it was over, I still looked like me on the outside (just with less hair from the chemotherapy), but I was undoubtedly no longer the same. Even now, I feel differently about my body and wonder how something so strong could have become so weak. But in the end, my breast cancer experience left me with a new way of living life that has brought unbelievable peace and happiness along with it.

    Breast cancer survivors need support for both their emotional and physical health. They may experience long-term treatment complications, and they must live with the risk of cancer recurrence or with the daily trials of metastatic disease. Support services can be limited, especially if you have no insurance.

    In our 25+ years of service, Komen Atlanta has enabled more than one million people to access lifesaving breast health education and screenings they could not otherwise afford. But the need in our area is great, with breast cancer mortality and late-stage diagnosis rates that are higher than the national average.

    Our most recent Community Needs Assessment showed a great need for better support for the survivors in our community who are still going through treatment, who will be forever fighters of metastatic disease and who have completed their treatment. Many of the survivors we spoke with shared how they had little access to support or wellness services after their active treatment. This is particularly true of survivors who live outside of the core metro area.

    Komen Atlanta wants to be on the forefront of survivorship support, and on March 21, 2015, Komen Atlanta and Cancer Treatment Centers of America in Newnan, GA, held Surviving & Thriving in 2015 – our inaugural survivorship conference for breast cancer survivors and co-survivors. The aim of the conference, which was free to all attendees, was to provide resources and tools to help survivors navigate life after breast cancer treatment, while also bringing together a community of support.

    More than 100 people attended this celebration, including a diverse group of survivors (both men and women!) and co-survivors (husbands, wives, children, friends and more). Topics included educational and inspirational discussions and presentations, as well as valuable time for attendees to share challenges and triumphs with one another.

    It was incredibly touching to watch one attendee, a 25-year survivor, assure a six-week survivor that she was not alone in her feelings of fear.  I know from personal experience the unbelievable impact of conversations like these.  There is nothing quite like bonding with other survivors.  And for many survivors, there are few opportunities to meet and talk with others going through similar struggles.

    Surviving & Thriving presentations emphasized the importance of being positive and mindful, finding one’s self after treatment, and living a healthy lifestyle to prevent recurrence. Dr. Anita Johnson (Medical Director of Surgical Oncology at Cancer Treatment Centers of America) and Dr. Neil Spector (Komen Scholar and Associate Professor of Pharmacology & Cancer Biology at Duke University) discussed the future of breast cancer treatment, the evolution of screening and diagnostic and services, and advances in breast cancer treatment.

    Knowledge is power, and we want survivors in Atlanta and beyond to be armed with the latest information to empower them to move beyond fear and into control of their own well-being.

    Breast cancer survivors are central to Komen Atlanta’s mission. We understand their victories and unique challenges, and we are here for them.

    If you plan to be in the Atlanta area, we would love for you to join us May 9th at Lenox Mall for our 25th annual Race for the Cure where we will continue our celebration of survivorship!

  • A Small World, United for a Big Cause

    I was familiar with breast cancer long before beginning my tenure at Susan G. Komen nearly two years ago. It had already made a lasting impact – both in my experience as a practicing physician and in my personal life. And I can’t help but appreciate what a small world it is that a breast cancer survivor I met years ago is now serving as an inspiration for people across the country.

    During my time at the Institute of Medicine (IOM) I met a young woman named Tracy. We had worked together from time to time on several projects related to aging, my field of expertise. Tracy had recently experienced both great sadness and great happiness – losing her mother to ALS, and marrying the man who calls her his “perfect match,” all within a year’s time.

    Then, she found a lump.

    I remember when she was first diagnosed. I couldn’t believe that this was happening to her and to others on our staff who had also heard, “You have breast cancer…” in a short period of time. It felt like an epidemic.

    Tracy insisted on continuing to work full time, despite our encouragement that she take time to rest and heal! I wanted to support her in any and every way possible, but she (like so many breast cancer survivors that I’ve met) was strong and determined to work through her treatment.

    One thing she did have a soft spot for was baseball. A passionate Washington Nationals fan, Tracy wanted to maintain some sense of “normalcy” during her treatment, attending games with her husband, and a fun “IOM night” that we hosted at the park. She and I bonded over our love of baseball.

    Over the years, we’ve kept in touch, meeting up periodically. I’m always happy when I get to see Tracy, but I was ecstatic when one of our Komen partners, Major League Baseball, announced that this year’s Honorary Bat Girl for the Washington Nationals was none other than Tracy!

    She will be recognized on the field and will deliver the lineup card before the Nationals play the Atlanta Braves this weekend, and also plans to join us at the D.C. Race for the Cure! I can’t wait to see Tracy, and celebrate her strength with hundreds of other survivors and baseball fans this weekend.

    This is a very heartwarming coincidence for me. But further, it demonstrates the lasting mark that breast cancer leaves on our lives.

    Whether you received a breast cancer diagnosis, or supported someone as they prepared for the fight of their life, this disease affects literally all of us.

    That is what will be on my mind this weekend as I am reunited with an old friend – we are all in this fight, this mission to end breast cancer, together.

    You can read her husband’s Honorary Bat Girl Contest submission, and learn more about Tracy’s journey, here. Read more about the Honorary Bat Girl Contest here