The Advocacy Alliance of Susan G. Komen for the Cure® uses the power of activism to achieve important legislative objectives at federal, state and local levels.  Three women from the Greater Cincinnati Affiliate put that activism into practice as they joined Komen Advocates from all over the country to spend the day on Capitol Hill lobbying their legislators.

On April 14, 2011, Peggy Isenogle, Executive Director, and Amy Weber, Community Health Programs Manager, of the Komen Greater Cincinnati Affiliate, along with volunteer advocate, Linda Croucher, spent the day on Capitol Hill lobbying legislators that serve the regions covered by the Cincinnati Affiliate.  This includes districts in the Greater Cincinnati, Greater Dayton, Southeastern Indiana, and Northern Kentucky areas. 

Amy, Linda & Peggy

The first issue was to educate our Members of Congress on the importance of early detection.  In the last three decades, the overall survival rate for breast cancer has increased from 74 percent to 98 percent.  This is due, in part, to improved patient education and increased access to screening. The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) has been instrumental in those improvements.  Since its inception twenty years ago, NBCCEDP has served 3.7 million women through breast and cervical cancer screenings.  These are provided to women by clinics and providers that have been awarded government funds to provide breast and cervical screenings and follow-up care for women who are uninsured and underinsured. 

As part of our lobbying efforts, we requested our Members of Congress to preserve the NBCCEDP, which currently receives $215 million from the federal government.  They were asked to show their support by signing a Congressional Resolution affirming their commitment to women’s breast health services by preserving NBCCEDP.  Preservation of this program would provide level funding of $215 million.  These dollars, provided through grants, along with the grants that are provided by the local Komen Affiliates, would insure that all women have the opportunity to be screened, and therefore possibly detected with breast cancer at its earliest, most treatable stage.

In addition to the request for level funding for the NBCCEDP, we asked our Members to support the reauthorization of the Breast Cancer Research Stamp (SB384; H466).  This is a stamp that was first issued in 1998 and has raised $72 million for breast cancer research.  The stamp is sold for 55 cents, for a 44 cent valued first-class stamp.  The remaining 11 cents from each stamp is dedicated to breast cancer research, with 70 percent of the funds being directed to breast cancer research at the National Institutes of Health, and 30 percent being directed to the Department of Defense Breast Cancer Research Program.  Reauthorization is needed by Congress to continue to make this stamp available past the end of 2011.

Peggy, Amy, and Linda visited ten legislative members and their staff representing Indiana, Kentucky, and Ohio. In our role as advocates, we met with both members of the Senate and House of Representatives to bring these important issues to their attention and maintain funding for breast health services and research.

A special thanks to volunteer advocate, Linda Croucher for sharing the important work being done by The Advocacy Alliance of Susan G. Komen for the Cure®.

Attendees heard from many of the leaders, active in the fight against breast cancer. Local affiliates from North Carolina and Oklahoma presented on their recent success in increasing their local budgets, which increased their abilities to extend their mission and support activities. A professor of Surgical Oncology, Dr. Mohamed Shalaan of Cairo, Egypt shared how the Race for the Cure has created more awareness than ever, in a culture that has kept the terrible disease concealed behind closed doors.  Attendees also heard from a panel of Komen Scholars- professors and scientists involved in ground breaking research. The Komen Scholars provided updates on targeted personal therapies, specifically in the fields of surgical treatment options and prevention methods based on genetic susceptibility. There were also representatives from the Komen Advocacy Alliance sharing tips and strategies for pursuing public policy and quality care in these tough economic times.

The Komen Leadership Conference highlighted the best-in class abilities that are only possible with the support and passion of our local communities. All of the components in the fight against this terrible disease were possible because of the local outreach and commitment to finding the cure- from fundraising with the Race for the Cure, to reaching women in rural communities where resources are scarce, to the initiatives taken by the Italian Affiliate of Komen to extend Komen’s global reach. In gathering and sharing these stories and experiences- it is with the hope that we may all learn from each other- to encourage and motivate one another, to further inspire the breast cancer movement.

Komen Greater Cincinnati representatives at the 2011 Leadership Conference.
Gene Barbor (Board Member), Hanna VanKuiken (staff), Amy Weber (staff), Peggy Isenogle (Executive Director, staff), Angela Norman (Board Member),
Karyn Ganaway-Balog (Board Member).

Click here for more photos and video from the conference.

The Photovoice process has typically been used to empower groups that are often “unheard” or “underrepresented” in traditional research (Wang & Burris, 1997; Wang, 1999). Female breast cancer survivors are often “moved through the agency processes” with efficiency and may come up against barriers that are often never addressed, recorded, or discussed. Photovoice was selected to (1) determine strengths and concerns of the current system, (2) increase discussion about issues facing this group, and (3) develop recommendations for improving processes that female breast cancer survivors experience.

A volunteer group of area breast cancer survivors participated in this project to be able to “tell” their story through photos. This project allowed women to reflect on their experience in a non-verbal way and perhaps “see” the process in a different way.  These groups took a number of pictures that they felt represented their experience as they moved through the process from diagnosis through survivorship. The photographs reflected breast cancer survivors’ experiences and comments that were collected in other forms of data, but put it into picture form for the community to “see”.

Wondering more about the Photovoice project? Send Amy your questions at mission@komencincinnati.org.

Local survivor and top Komen fundraiser, Jan Middleton attended the C4YW 2011, and gives us an insight into her personal journey, and the hope and empowerment that this conference offers:
As a 3 year breast cancer survivor I always tell someone newly diagnosed that we all must take this journey in a way that works for us.  We cannot let others tell us how we should feel or how we should communicate. We must find our own way to mourn the many losses such as our breasts, our hair, our ovaries or our old lives.  Some women want to learn as much from the internet as possible and others want to only hear medical information from their doctors.  Some of us want private time to reflect while others prefer to be surrounded by people- the people we love, other survivors/support groups. 

When I was diagnosed in September of 2007, I was not private about my diagnosis but I could not handle being around others with cancer.  I am not sure why that was.  I was overwhelmed, terrified and felt like I could not be with someone that was or had gone through the horrible times that I was now experiencing.  One night, after spending way too many hours on the internet with Dr. Google (I don’t recommend this to anyone) I came across a website that was full of information dedicated to young women and breast cancer.  Getting breast cancer before menopause is not a good thing…this is the one time in your life that being “young” doesn’t necessarily play in your favor.  Young Survival Coalition focuses on critical issues unique to young women who are diagnosed with breast cancer. They provide resources, connections and outreach so women feel supported, empowered and hopeful.

The area of the website that got most of my attention was the online support group.  There were women from all over the world that were just like me….they were the same age as me or they had young children like me or they were worried about managing work and treatment or they were concerned about relationship issues.  I would spend hours reading the different online discussions and also the “signatures” of each participant.  Within most women’s signatures they would list their diagnosis, their treatment plans, surgeries, recurrences, etc.  I followed this site for weeks before I finally found the courage to become a member and post.  As soon as I did I received welcome messages from many women….welcoming me to the club that no one wants to join.  From there I joined a treatment group.  This is a group of women all starting chemo in the same month.  I went from doing this terrifying journey alone to having several girls sharing their experiences as they took the same chemotherapy drugs, lost their hair, got sick and tried their best to hang on to some type of normalcy in their lives.  As a treatment group we also had the support from hundreds of other members that were like big sisters to us.  They would follow our posts and “drop in” to offer advice on a variety of issues from nausea to how to talk to your children about losing your hair.  I had found my safe place!  These women became my sisters and they got me through the darkest days of my life.  They were there for me in the middle of the night when I could not sleep due to the fear that I may not live to see my children graduate from high school and they were there to celebrate with me when I got my new foobs (fake boobs)!

I was blessed because I had my friends and family that were so supportive of me…they helped with the kids, brought us meals and offered us constant support.  Along with these people from my “real world” I now had hundreds of new sisters that were there to help me and as I moved through my treatment I was able to begin to help others from what I had learned.  I would have never been able to get this far without all of these caring people.

I just returned from my third Conference for Young Women affected by Breast Cancer. Sessions offered over the weekend cover a variety of topics such as fear of recurrence, treatment updates, reconstruction options, metastatic disease, etc.  There are also sessions designed specifically for care providers and family.  During the weekend there are several opportunities for networking.  Break areas are designated by newly diagnosed, long term survivor, diagnosed while pregnant, triple negative disease, etc.  During breaks participants can meet with other survivors that they have something in common with.  Since many women attend the conference alone this is a great way to meet someone new.  It is wonderful to watch new friendships blossom and develop over the weekend. 

One of my favorite parts of the conference is the exhibitor area.  In this room you will find vendors selling all types of pink ribbon clothing and items, mastectomy swimwear, lymphedema sleeves, headcovers, etc.  Many of the drug companies that work with breast cancer have reps at the conference.  Part of my treatment plan included the drug Herceptin which I believe is the miracle drug for HER2 + breast cancer.  I will never forget meeting the Genomic Health rep at the Dallas conference in 2008.  He was able to answer so many questions for me and had all types of charts/graphs to show me on HER2+ breast cancer.  Massages and make up sessions are offered for free and we all love having our picture taken with Dusty Showers, (pictured, right with Jan) of the 2nd Basemen, and the Good Health Fairy (beyondboobsinc.org)! 

On Saturday evening there is a dessert social with a DJ and dancing, this is when everyone really comes together to relax and have fun.  I can tell you that there is nothing more moving than standing in the middle of hundreds of survivors on a dance floor and seeing their smiling faces as they sing “I will survive”!  For just a moment all worries are gone, the aches and pains seem to subside, the fear seems to go away as you feel the connection to these incredible women that surround you, we are brought together by tragedy yet we share a bond that only we can comprehend.    
The event ends concludes on Sunday and as the participants begin to depart there are many hugs and lots of tears.  Women that attend this event leave with a new sense of courage and empowerment to take control of their lives and not let cancer take control of them.  These women leave with an inner peace, they have been surrounded by women that really “get it”.  They leave with new friendships and
                                                          special memories created by reconnecting to old friends.

I want to thank Susan G. Komen for the Cure for being a major sponsor for the Conference for Young Women affected by breast cancer.  An event like this would not be possible without Komen’s support and I appreciate the fact that Komen recognizes the unique needs of women that are diagnosed prior to menopause.  We must continue to raise awareness and support the unique needs of young women that are diagnosed with breast cancer.  As I continue my cancer journey as a survivor my hope is that my daughter and all young girls will be able to grow up in a world without breast cancer. 

Have you ever had a moment while doing something small, that has triggered something inside of you so strong you decide you HAVE to do something about it?

That happened to me in 2004. I was in New York City participating in my very first Race for the Cure, and I was filling out the placard to put on my back during the walk. As I started listing the women that I was walking in Memory of and in Honor of, I realized it was going to take me two full cards! Two cards full of my friends, my great-grandma, and my grandma. It gave me a lot to think about during those 3.1 miles from Times Square through Central Park. More than 40,000 people participated in the race that day and I was amazed at the stories being told around me and reading the cards on all of those backs. Most of all, following the race was the Survivor Ceremony, and hearing women introduce themselves and telling how long they had been survivors…2 years, 17 years, 33 years…3 weeks. Seeing so many people united made me want to get more involved.

In 2010, I lost my job after almost 9 years with the same company. Sitting at home was driving me crazy. I didn’t have any money to spend and I had nothing but long days with a lot of time on my hands. I received the Komen Greater Cincinnati E-newsletter. This particular edition, they were asking for committee members for the 2010 Race for the Cure. I emailed back and said that I was interested in volunteering. I walked in to the office thinking that maybe I would help on a committee, and I walked out the Volunteer Coordinator for the entire Race!

Driving home, I immediately called my mom to tell her what I had done, and that I had volunteered her to help me. Normally, I would have given her a choice in helping me but this day was a little different. My mom said not a problem and took off work for that Friday and Saturday of Race weekend!

The 2010 Race day was September 25th. As excitement grew and volunteers started rolling in, I couldn’t wait for the day to arrive. I also took Friday off of work so that I could help with set up. My mom and I arrived and helped organize the boxes and boxes. I was at the Great American Ball Park by 5:00AM. It was a beautiful fall morning, clear and just crisp enough to keep you cool while getting everything started. As the sun came up, both my mom and dad were busy checking volunteers in and pointing them in the direction of their committees. My mom and dad and the team that I had in the volunteer booth made the event one that I will never forget.

As the volunteers arrived and the sponsors set up, I was able to look around and see first-hand that the day was going to be extraordinary. At the sun moved higher in the sky and the 18,000 participants began gathering along Nuxall Way for the start, the buzz in the air proved that we were making a difference in the world. 5 kilometers/ 3.1 miles is not a very long way, but it is a long way when 18,000 people are united for one cause. The crowd united as one voice, shouting together that breast cancer will not beat us; it is not stronger than us. As the competitive runners came through the finish line and then the walkers, you could see a sense of accomplishment on each of their faces. They just made a contribution to the millions of supporters and survivors around the world.

                                                                 Above: Chris (far right), her family and volunteers at the 2010 Race for the Cure.

About that time, my brother, sister in-law, and nephew, Jae, were participating in the kids fun run. Jae was about 19 months old, as they brought him out on the field his eyes lit up. What a cool experience for a little kid. Heck, what a cool experience for the big kids (like me…and my parents)! With the music playing over the stadium speakers, Jae would run a few steps and then stop to dance…run a few steps and then stop to dance. This went on all the way down the third base line! At the finish when he received his completion medal, he was so proud. He showed everyone that he saw and held onto it until he fell asleep in the car. One tiny little step in support of his great-grandma.With everything that happened that day, I can say that September 25, 2010 was probably in the top rankings of best days of the year for me.

I am fortunate that I have found an organization that does work I believe in. Once I started volunteering with Komen Cincinnati, I wanted to find more ways to help. I was also lucky enough to find a job not long after I started volunteering. I still don’t have a lot of money to donate but I still have plenty of time. I volunteer with Komen in many other ways other than the Race. I have been happy to help by selling raffle tickets, honored to help on the field at the Red’s Mother’s Day game, assist at the Power of a Promise awards and help at the Q102 Bosom Ball, featuring Sara Bareilles (2011 Grammy Nominee!).I love being a part of the Komen Greater Cincinnati team. I am excited that new volunteer opportunities are coming up all the time and can’t wait to start working on the Race again! I highly encourage anyone to join our efforts. We will have hundreds of volunteer positions open for the 2011 Race so SAVE THE DATE: September 24, 2011. (But don’t worry; you probably won’t have to be there at 5:00AM!)

A special thanks to Chris for her contribution!

These local companies not only raise funds, but spread awareness.
So, how do they do that?

Several businesses have decided to go pink for the year, creating ongoing campaigns to donate a portion of their profits to Komen Greater Cincinnati. Local programs range from usage of a pink tow truck to a fine dining point program. Click here to check out some other the other businesses in the Greater Cincinnati area that have gone pink for 2011!

There are many local organizations that work year round, in preparation for an event to bring awareness and support to finding the cure! As the hosts of their fundraising event, these organizations and businesses take care of everything, from entertainment, to the venue, to ticket sales! They have thought of it all, and are so dilegent in planning for success! We love these pink events! You can stay up to date on all of these upcoming events here.

A huge THANK YOU goes out to all of our local businesses and groups. Your relentless effort and support invaluable!

Welcome to the Official Komen Greater Cincinnati Blog!

Komen national budget, we have found an invaluable opportunity to support research locally, through a grant at the University of Cincinnati. Glendon Zinser, Ph.D, leads a study investigating the role of vitamin D during breast development focusing on vitamin D signaling in adipose and epithelial tissues within the breast.

The Research

The object of any research is to prove or disprove the  hypothesis,  or to simply answer questions.

The hypothesis leading this research is: Breast adipose (fatty) tissue stores excess vitamin D in our bodies. That vitamin D can be activated and utilized by adjacent breast epithelial cells (cells lining the fatty cells), to regulate or slow the growth of both normal or transformed (cancerous)cells in the breast.

So, what does this mean?

The question at stake is: Can the appropriate levels of vitamin D slow breast cancer cell growth?

While this may appear to be a simple question, there are many functions, variables, and additional questions that must first be addressed.

To skim the surface, a few of those questions that Dr. Zinser and his staff have encountered are: Can the adipose (fatty) tissue activate the stored vitamin D to be utilized by the adjacent breast epithelial cells? How does vitamin D affect growth during hormonal pubertal development? Can adipose tissue alone regulate the growth of breast cancer cells, or is it dependent on the epithelial tissue for the body to benefit from vitamin D signaling in this way?

As research progresses, it has been discovered that the stored or inactive vitamin D can be activated by adipose tissue, and utilized by that fatty tissue to communicate with surrounding epithelial cells to slow cell growth. As Dr. Zinser and his team move forward, they are focusing on further communication abilities between the two types of tissues through controlled lab work with mice and cell culture models. They are additionally singling out adipose (fatty) tissue to test the single tissue’s ability to regulate cancer cells when exposed to vitamin D.

So, again, what does this mean?

This means that we’re moving forward, we are answering questions, we are discovering. But there is still work to be done. The human body is an intricately orchestrated instrument, and each tissue, each vitamin a crucial role. As Susan G. Komen for the Cure released nationally, in Komen Perspectives, the Institute of Medicine advised levels of vitamin D are only slightly elevated from previous recommended daily values, though not without question. This area of research is active and there is a demand for more work and deeper understanding.

A special thank you to Dr. Zinser and his team for their work in the fight against breast cancer.