The Susan G. Komen® Puget Sound Affiliate recently embarked on a remarkable journey to expand Komen’s mission by addressing breast health disparities in the culturally diverse sectors of their service area. To support our mission, Komen Puget Sound sought out the translation of Breast Self-Awareness Messages cards in five East African dialects, thanks in large part to their partnership with Goodwill Seattle.
Goodwill Seattle worked with Komen Puget Sound to specifically target translations in Tigrinya, Amharic, Oromo, Swahili and Somali for their staff and case managers who often work with immigrant students in their ESL and job training classes.
For Komen Puget Sound, outreach and education to African immigrant groups is a common need that has been identified through focus groups and key informant interviews. In approaching the Komen Headquarters Education team about developing new Breast Self-Awareness Messages cards, their first priority translation was Tigrinya. Komen HQ and Puget Sound worked together to complete the translation process, and the next step was to find a community member who could review the card.
Ironically, while Puget Sound was working to identify a community reviewer, the Komen Greater Kansas City Affiliate Communications Manager Michael Levine reached out to the Komen HQ team with regards to a similar request – to have the Breast Self-Awareness Messages card translated into Tigrinya.
This educational material would be utilized by news anchor, Cynthia Newsome, who worked with Komen Greater Kansas City’s longtime media partner KHSB-TV. Cynthia was preparing to embark on a mission trip to Ethiopia, and hoped to bring the Breast Self-Awareness Messages card along with her for distribution.
This request came through at the ideal time, as Komen Greater Kansas City was also able to provide the much-needed community review of the card from a local physician who was able to read and write Tigrinya which helped to expedite the translation process.
Once this community review process was complete, 1,000 cards were printed, cut and packaged by Komen Greater Kansas City and sent directly to Cynthia for distribution during her mission trip. Cynthia’s trip proved to be a pivotal turning point for this initiative, as she spoke about breast self-awareness to two specific camps with refugees totaling more than 15,000 people and created quite the buzz locally.
For Cynthia, this journey was a passion project stemming from her own experience and battle with breast cancer. As a three-year breast cancer survivor, she has great passion and commitment to sharing her story and empowering other women. Both her and her husband Ed traveled together to northern Ethiopia, with the goal of empowering women to know their risk, get screened, know what is normal for them and make healthy lifestyle choices.
For them, the message was simple – early detection and effective treatment saves lives. But for many refugees and women throughout Ethiopia, getting diagnosed and treated can be a challenging, time-consuming process.
Dr. Mathewos Assefa, a Radiation Oncologist at Black Lion Hospital in Addis Ababa – the only state-funded hospital in Ethiopia where cancer care is available to patients who cannot pay for their own said, “Many women who find a lump in their breast do not come in because they don’t feel any pain and mistakenly believe there’s nothing wrong.”
Dr. Assefa further elaborated by saying, “By the time they come in the cancer is already spreading through their body.”
This seemed to be shared concern amongst numerous areas in Africa, with similar issues were being raised during their visit to Kenya. Local medical oncologist Dr. Alice Musibi stated, “Awareness, awareness, awareness. That’s what we need. Women need to first know what the signs and symptoms of breast cancer are and then know where to go for help, and then we also need the financial resources to be able to help treat those women.”
For Cynthia and her husband, these concerns and the staggering statistics are what made their journey to Africa so important. Both are committed to continuing their efforts to help raise awareness, and having this tool to take along with them only served as an added benefit for the countless refugees they came in contact with during their trip.
In the U.S. and around the globe, education is a key component to staying healthy no matter where you live. Having the opportunity to share messages that could potentially save someone’s life is an honor that our Affiliates are always pleased to accept.
With active programs in more than 30 countries, Komen and our global network of Affiliates work to connect people – regardless of native tongue or cultural background – with culturally appropriate and relevant information and resources. We are a unified front against breast cancer, and we will keep working in countries everywhere until we’ve beaten this deadly disease.
Blog post by Annabell Oh, PhD, Evaluation Manager, Evaluations and Outcomes at Susan G. Komen
In our online and email-centric world, it’s lovely to be reminded that face-to-face meetings are irreplaceable. In early November, my colleague, Tauane Cruz, Regional Manager, Latin America, and I had the opportunity to meet a number of grant recipients of Komen’s Graduate Training in Disparities Research (GTDR) Program. This meeting is held alongside the AACR Cancer Health Disparities Meeting, proudly supported by Komen.
The GTDR Annual meeting allows mentors and trainees from GTDR programs across the nation to meet in person, to network, and to share their experiences and research on breast cancer disparities. Breast cancer disparities are differences in cancer outcomes that occur in specific populations, such as in racial/ethnic minorities or those with lower socioeconomic status.
The idea that laboratory findings need to benefit patients – translational research – is engrained in me since my doctoral training as a cancer biologist. Professionally, I mostly focused on bringing a discovery to “the bedside,” since that alone is pretty challenging.
But, reaching the bedside isn’t enough.
Komen’s Graduate Training in Disparities Research grant program was established in 2009 and has funded 14 programs to help over 60 graduate students achieve either a masters or doctoral degree with a focus breast cancer disparities research.
Students, like Kathy Tossas-Milligan, reminded me that research discoveries need to be accessible to all people – regardless of social status, economic status or where they live – to make an impact towards ending breast cancer. Kathy is following her passionto end breast cancer disparities in the Chicago area by pursuing a degree in cancer epidemiology through the University of Chicago’s GTDR program. Kathy is working to improve mammography quality for all Illinois residents by establishing a mammography facility quality surveillance and reporting system.
GTDR mentor Dr. Michele Cote is also passionate about ensuring that the benefits of research need to reach everyone – again, a refrain I heard often throughout the meeting. Dr. Cote is just starting the GTDR program at Wayne State University, and wants its graduates to be prepared “right out of the gate.” Dr. Cote hopes to train students to be mindful of both epidemiological and basic biological research findings are reaching its intended populations and work towards reducing existing gaps.
The scientist in me can’t help highlight what I learned from the research presentations at the meeting, but I’d only be sharing half the experience. I also experienced the genuine enthusiasm felt by the mentors and trainees for their research as well as their appreciation for opportunities made available by funding for the GTDR program.
Nina Verekina, a GTDR doctoral student from Pennsylvania State, is studying disparities in the quality of cancer care in rural and urban populations. Nina was kind enough to share her story. “As a Komen trainee, I research a topic that is very close to home. My grandmother passed away from breast cancer when she was 39. My mother grew up without her mother and named me Nina in her honor. While I cannot bring my grandmother back, I hope that my research will lead to breakthroughs that will give others an opportunity to meet their grandmothers,” says Nina.
Learn more about the GTDR Program and other types of Komen research grants.
Learn more about breast cancer disparities from a recent Komen Perspectives article.
Read our Mission Fast Facts that summarizes our efforts to reduce breast cancer disparities.
Blog by Komen Quad Cities Board President Laura Ernzen
As the color pink seems to be everywhere throughout the month of October, I’ve often thought about what makes Komen different from the many other breast health organizations asking consumers for support. That difference came into focus for me at a recent event series hosted by the Komen Quad Cities Affiliate.
In the spirit of full disclosure, I’m a long time Komen volunteer and currently serve as Board Chair for Komen Quad Cities in Bettendorf, IA. In my professional life, I’m the Vice President of Marketing for IH Mississippi Valley Credit Union. It’s a unique perspective to be both on the asking and giving sides of sponsorship and donation requests. I’ve had the pleasure of working with non-profits who have a clear mission, illustrate how they use their funds and share the impact they’ve made in my community. Others have walked out my door leaving me wondering—unsure and unclear. So when we crafted plans for our recent Race to Research event, featuring Komen Scholar Dr. Olopade, we wanted to make sure it was focused on Komen’s mission.
Dr. Olopade hit the Moline International Airport running, and we kept her busy with back-to-back events. We were joined by many long-time supporters, third party fundraisers, community health professionals, survivors and volunteers. In about hour and a half, we talked about how we raise money, and how our local grants program puts those dollars to work in the communities we serve. Dr. Olopade, the featured speaker of our luncheon, shared how her efforts, and those of many others, are driving breakthroughs in breast health.
Later, Dr. Olopade led an educational session for area health professionals. Every day our Komen Affiliate strives to fulfill our mission, but these dedicated individuals are on the front line – nurses, technicians, doctors and community health advocates openly sharing and learning from one another. It served as a great reminder that our mission extends beyond education and outreach. Sometimes the most important thing we do is create a community—a community of survivors, advocates, health professionals and volunteers.
We ended the day with a community forum, featuring Dr. Olopade and local experts Dr. Hass and Dr. Mercer. With varied backgrounds and experiences, it was impressive to see these doctors, from different hospitals and states find so much common ground as they answered questions from the audience. It never ceases to amaze me the range of questions asked. Perhaps it speaks to the varied experience of everyone who’s gathered, from “should I get genetic testing”, to pros and cons of various screening methods, the wealth of information shared and the learning that took place once more reminded me how truly important Komen’s work is in the lives of women and men everywhere.
From the luncheon, to the education session, to the community forum; a wide and varied group came together. That drive, that commitment to meet at our mission, is perhaps what makes the Komen difference.
Susan G. Komen is the voice for the more than 3 million breast cancer survivors and those who love them, working to ensure that the fight against breast cancer is a priority among policymakers in Washington, D.C., and every Capitol across the country. Komen has a rich history of more than 30 years in public policy and advocacy. In order to achieve our mission, we believe that scientific progress must be complemented by sound public policy and advocacy. Through government action, broad, systemic, lasting change can be made in the fight against breast cancer. This means that Komen—as a patient advocacy organization with first-hand knowledge of how breast cancer touches local communities—must engage policymakers and government as partners in our efforts to end breast cancer forever.
As the 114th Congress and state legislatures convene this month, Komen is pleased to announce its 2015 Advocacy Priorities. These issues will serve as the focus of our advocacy work in the coming year. They are:
-Support expanded federal funding for breast cancer research at the National Institutes of Health (NIH) and the Department of Defense (DOD);
-Support state and federal funding for the Centers for Disease Control and Prevention’s (CDC) National Breast and Cervical Cancer Early Detection Program (NBCCEDP);
-Advocate for policies to improve insurance coverage, including those that would require oral parity, preclude specialty tiers and prevent step therapy protocols; and
-Evaluate state and federal policies to reduce or eliminate out-of-pocket costs for medically necessary diagnostic mammography.
To advance our policy priorities, Komen works with our staff, volunteers, grantees, researchers and friends in communities across the United States, to ensure breast cancer is a priority among policymakers at the federal, state and local levels and to increase access to affordable, high quality breast health and cancer care services.
Each year, Komen works to identify, through a transparent and broad-based, intensive vetting and selection process, the policy issues that have the greatest potential impact on Komen’s mission. This process includes the collection of feedback from Komen Headquarters leadership, policy staff, and subject matter experts; Komen Affiliates from across the country; advisory groups including the Komen Advocacy Advisory Taskforce (KAAT), Advocates in Science (AIS), and Komen Scholars; and other stakeholders with a vested interest in breast cancer-related issues. The selected issues are the basis for Komen’s state and federal advocacy work in the coming year.
We are excited about the potential of our 2015 Advocacy Priorities and, as always, appreciate the enthusiasm and hard work of our supporters to ensure that breast cancer issues are front and center before policymakers.
Stay tuned to the Komen blog for updates on this important work. Looking forward to a wonderful 2015!
Learn more about Komen Advocacy here.
Those words hung in the air – weightless – creating an emotional limbo into which I floated
Finally I said, “What isn’t fine – now?”
I didn’t want this conversation, I thought, but, as I heard the results of my mammogram, I kept hearing in my heart, “You’ll be fine, really… you will be fine”. It appeared that Dr.Connor had just provided me with the mantra that would take me through my season with breast cancer.
Breast cancer was the iconic phobia of my life, and now I had it. Strangely, the word itself lost its obnoxious power to frighten me, as my husband, Bill Rollnick and I began our private race for a cure. But, to my surprise we were not running alone.
Friends appeared with loving support and information. Among them, Nancy Brinker, (a remarkably caring woman who has dedicated her life to ending breast cancer) who assessed my situation and candidly gave me her best advice:
“Don’t be a brat! Listen to your doctors!”
“Yes Ma’am,” I muttered, in the throes of endorphin-released laughter.
It wasn’t so funny, however when I began my research.
The first topic that caught my eye was, “Breast Cancer Death Without Treatment.” Well, that certainly cuts to the chase! I read it, but the only word I remembered from the article was ‘treatment,’ which brought on a massive, emotional surge of gratitude. I could turn my back on death.
I can be treated. I will be fine. My mantra has taken on a codicil.
Doing cancer research on the Internet can be daunting, but I soon found the Susan G Komen and Mayo Clinic: Diseases and Conditions websites. They became my go-to sites for both their accuracy and relevance.
Bill and I choose M.D. Anderson in Houston, Texas, and I had my team – Incredible doctors headed by Dr. Tom Buchholz.
Diagnosis: Left Breast – Stage 2 Node Negative, Invasive Lobular Carcinoma.
Treatment: Four weeks of radiation followed by adjuvant hormonal treatment (five years of aromatase)
Comfort Food: Goode’s Texas BBQ and Molina’s Cantina.
I was set, and I could not believe just how lucky I was. I really will be fine!
When I first arrived I heard the clanging of a bell. Odd, I thought and asked what it was. “The bell that is rung when someone has finished treatment”, I was told. Wow, I thought. One day Bill and I will ring the bell together. It became our goal – our victory.
That month at M D Anderson changed my life, not only because of the superlative treatment I received, but I found I had become part of a community of women (and men) who care, who love, and who join joyfully together to celebrate life one day at a time.
Bill and I often think back to my time at M. D. Anderson… to the truly brave women – many who had lost their hair and who were facing stage IV diagnosis, to their stories, to their laughter and friendship, and finally to the bell that rang each time a patient finished their treatment, offering us all hope with each triumphant chime.
Is there any wonder why we both are passionate to support cancer research and treatment?
This year, my husband and I are honored to co-chair the Susan G. Komen’s 5th annual Perfect Pink Party, held in Palm Beach, alongside Christina Baker. The event raises much needed funds for cancer research and treatment. We thank them for the incredible work that they do, and for the reality that this happy, fun event will make a difference in the lives of breast cancer patients all over the world.
Click here to learn more about the Perfect Pink Party and Komen’s work in the Palm Beach area.