2013 African Breast and Cervical Cancer Advocacy, Education and Outreach Summit Uganda

My experience as a breast cancer survivor over the past four years has led me to the most interesting scholarship experiences, but in September I was invited to attend and speak at the 2013 African Breast and Cervical Cancer Advocacy, Education and Outreach Summit in Kampala, Uganda.  This would be the first conference of it’s kind in Africa and for me, the opportunity to make an impact.  Earlier in the year while lobbying at a National level with advocates from Nigeria and Ibadan, I learned how African countries lacked the infrastructure to safely support newly diagnosed women through therapy.  Uganda continues to lead East Africa with its Cancer Center and 11 Medical Oncologists thanks to the support of the Fred Hutchinson Cancer Research Center and the University of Washington.  The opportunity to meet the Ministers of Health, NGOs, advocates, doctors, researchers, volunteers and survivors enticed me to attend the Summit in addition to presenting my idea on a program called Survivors in Science.  I shared information on scholarships and opportunities for those wanting to bridge information from science to the survivors themselves.  The conference was created in partnership with the Breast Cancer Initiative East Africa, which was founded here in Houston by Philippa Kibugu-Decuir, and the local Uganda Women’s Cancer Support Organization.

Then, just two weeks before the summit, I received a ticket for my flight to Uganda and only then, did I get all the required vaccinations and malaria medications needed to travel!

Flying to Uganda with two other survivors Philippa and Joyace Ussin, an oncology nurse from MD Anderson took a total of almost 36 hours but it was all worth it when the Summit finally came together and started.  From a secure hotel the conference room was filled with a total of 75 in attendance including local Ministers of Health, doctors, advisors, researchers, survivors, advocates and volunteers representing 8 different countries all under the direction of Dr. Julie Gralow, Endowed Professor in Breast Cancer, Professor, Department of Medicine, Division of Medical Oncology and Adjunct Professor, Department of Global Health from the Fred Hutchinson Cancer Center and the University of Washington.  In 2003, she launched Women’s Empowerment Cancer Advocacy Network or WE CAN to connect countries to improve women’s health through education, advocacy, sharing and reaching out. The 501(c)3 nonprofit specifically works to empower areas of limited resources with education, networking and the inspiration needed to overcome limitations to access to care.  If advocates can’t get the resources they need through public channels, then she helps them work privately to bring in resources to screen women, referring any suspicious cases through available health channels.

The conference opened with a powerful song about survivorship written and sang by a survivor, before a panel of Goodwill messages moderated by the Uganda Cancer Society.  Drs. From local NGO’s including Dr. Kingsley Ndoh MPH from Nigeria  spoke about the opportunities available for increased sustainability for cancer health care including the role of government in prevention.  Dr. Jo Anne Zujewski from the National Cancer Institute chaired a panel on Breast Cancer Education before Dr. Gralow chaired the session on Cervical Cancer education.  The day wrapped up with sessions on Palliative Care and Successful Mobilization of Policy Makers to support Breast and Cervical Prevention by the Parliament of Uganda.  Day two was led by LIVESTRONG with Advocacy and Stigma Training, which was highly beneficial to the current culture of progress within East Africa.  The session included defining mission goals, strategies and tactics needed to start to move the needle on social stigmas.  Currently the cancer stigma includes being shunned by the entire family and being sent to the hospital with all of their belongings thinking they will surely die and never return.  Day Three included an activity that separated the entire group between those pretending to be diagnosed with cancer and those told they had normal results.  I had normal results.  Discussion took place as to how this felt among the group and at one point a normal patient was then misdiagnosed and asked to join the group diagnosed with cancer.  She shared her feelings of confusion and denial wanting a second opinion.  The activity initially made me mad until a nurse helped me see that this finally brings home the news of being diagnosed to those that can make a difference for so many others.  Cancer doesn’t care about the patient’s color or political persuasion and the more tolerance we have globally to work together towards a better understanding of the disease then the more people we can get access to care creating survivor advocates like myself.

After long breaks that were termed “Africa Time” because they included lots of networking, my 1:15pm presentation became a reality an hour later.  Sharing my experiences with identifying, applying and winning scholarships that promoted education and knowledge for local survivors was well received and as it turned out, it was only well received by those countries that had survivors.

I knew I wasn’t in the states anymore when Dr. Claudia approached me with sadness and excitement and told me that her country of Madagascar does not have survivors.  The words didn’t compute in my head until she said that some of the Madagasy, if they have the money, fly out of the country for their Cancer treatment and most don’t return.  By the end of the conference, it was clear that making a difference by coming together needed to happen in Madagascar and a date has already been set for next year on April 6, 2014.  She plans to host a conference on Cancer Education and Advocacy and promises to find survivors so I can train them on how to become educated patient advocates!  Now that’s what I call team work.  Even after returning to the States, the networking continues as I continue to make a difference from Houston.  However, I need to plan a sight seeing trip next time I visit Africa because this trip was a nonstop mission trip.

South Africa to North West Houston: Empowered with Information

Winning a scholarship from the Conquer Cancer Foundation to attend the American Society of Clinical Oncology or ASCO Annual Conference in Chicago earlier this month turned out to be a godsend.  I had no idea that I really needed to be there and figured that I wouldn’t win an award, until I got the message that it was on!  To accept the award you basically have to agree to be there from the beginning of the event all the way through the very end participating and then disseminating the information you receive when you get home to your constituency.  No problem.  I talk to survivors from Alamo Breast Cancer Foundation referrals, CanCare Support Network referrals, Young Survival Coalition or YSC as a State Leader referrals, host my own YSC F2F or Face 2 Face Support Group in NW Houston, receive referrals through Facebook, and friends helping survivors connect to information they need.  And you know what?  They didn’t even know they needed to know the information.  I am always talking about that concept so I shouldn’t be surprised that it keeps happening to me.

Before I even arrive, I start asking my networks of advocates, “Who’s going?”.  And you know what?  I really only knew of one person who was going and that was Sandi our President of Alamo Breast Cancer Foundation and I was thrilled to get to spend time with her.  Plus, since it was my first time to attend ASCO I didn’t have all the cool invitations to pre- and post events and parties until Sandi added me as her guest.  Together we had a fantastic time learning about new technologies, nonprofits and groups of support that were interested in meeting with Alamo’s advocates through their Patient Advocacy Program held at the annual San Antonio Breast Cancer Symposium.  We had a blast.  We were the Sandi/ys.

ASCO was held in Chicago and I hadn’t been there in exactly ten years when I had the opportunity to visit for my birthday, so I was excited to see the City again.  There were more than thirty thousand oncologists and doctors in attendance presenting the latest in research and breakthroughs in all different types of cancer.  It was amazing.  Of course I had to register for the two sessions that I couldn’t miss and as it turned out, there were additional costs for each session.  The first was on Spirituality and Oncology and the second was on Building Bridges in Philanthropy.  Just my cup of tea and I still didn’t spend my entire scholarship!  I met Drs. Jimmie and James Holland and little did I know that Dr. Jimmie Holland had just turned 85 years old and she was a pistol!  I loved this lady and had know idea when I was talking to her that she would then lead the presentation and then be swarmed with cameras afterwards.  She was just the little lady who sat in the front with me before the session started…  Of course, then I find out that it was her husband that trained the doctors who then went back to South Africa and ultimately launched the African Organization for Research and Training In Cancer or AORTIC Conference!  I say this with glee because I was recently asked to speak on Advocacy in Rwanda for the Women’s Empowerment Cancer Advocacy Network or WE CAN Conference launching in Rwanda in September of this year with Houston’s own Philippa Kibugu-Decuir who founded the Breast Cancer Initiative East Africa or BCIEA which provides the resources and link to those affected by breast cancer in Rwanda.

It was at the ASCO President’s Event at the Field Museum in Chicago when I ran into Dr. Julie Gralow who we all know and love within the Breast Cancer Community because of all the work she does empowering patients in areas of the world with limited resources with WE CAN.  It was great to get to know her and get a better understanding of the three-day conference I’d been invited to attend and speak on Advocacy and Fundraising.  It was Jimmie that wanted me to introduce her to Dr. James Holland and making the introduction seemed like it was meant to be, because it was.  I figured they knew each other, but they did not.  Not yet.  Dr. Gralow urged him to speak at the WE CAN Conference so that all the new and young doctors could get a better understanding of how far they’d come and he kept talking about seeing children heal within the four days we would visit because of what he saw and how they were being treated differently.  She urged him to speak but he was not interested.  He had his loyalties to AORTIC Conference in November and once Dr. Gralow left we continued the conversation.  Finally, I offered to film him sharing his message so that we could then, take it to Rwanda and present it to our audience and after a continued conversation, he AGREED.

Just like sharing and connecting information that empowers women with cancer from the States to South Africa makes a difference, so does sharing the latest in Hot Topics from ASCO to the Community of Houston on Saturday, June 29th from 9am to Noon at the Cypress Creek Christian Community Center aka The Centrum located at 6823 Cypresswood Drive, Spring, TX 77379.  Registration and breakfast starts at 8am.  Dr. Camacho from St. Luke’s will present a stunning overview of how we are all working together to support Cancer survivors in general and not just breast cancer survivors.  Then, Dr. Giordano from MD Anderson will talk about the latest in male and female breast cancer hot topics announced during ASCO.  Then, we will end with a dynamic Survivorship Panel discussion including Dr. Oliver Bogler from MD Anderson and his wife Dr. Irene Newsham who together had the same breast cancer at different times.  In addition is our very own founding ABCF Houston board member and metastatic survivor Jody Schoger who co-founded #BCSM which is a breast cancer support group held monthly on twitter, plus Amber Gillespie who represents young women everywhere from the Young Survival Coalition when she was diagnosed at 26 years of age.  Keep in mind that you will be totally surprised at the things you don’t know that you don’t even know!

The Inaugural Community Update is a manifestation of the time and energy of Houston’s own ABCF board of survivors and caregivers including Betty Sommer, Bonner Cutting, Jody Schoger and myself.  I came back from Project LEAD last year having just been introduced to the ladies of Alamo and wondering why in the world Houston, of all places, didn’t have it’s own Community Updates for Breast Cancer Survivors, Caregivers, Social Workers, Friends and Families in which to learn about the latest announcements and breakthroughs in breast cancer research!  So, we created the event and then had to cancel it when people’s eyes would just glaze over when we tried to promote it to media and survivor support groups.  We are all really confused as the lack of response, but vow to continue the crusade.  If you are interested in learning more about the latest in research on breast cancer and how it may affect you, please join Houston’s own ABCF by becoming a member of ABCF at http://www.alamobreastcancer.org/  There we have a tab on the site for Houston that also has more information.

Please help me continue to Advocate for a future without Breast Cancer by Empowering local Houstonians with education through a dialogue of the latest Hot Topics from the ASCO Conference.  If you are in Northwest Houston, join me on Monday, June 17th from 7-9pm at La Madeline located at the 19710 Northwest Freeway, Suite 100, Houston, TX for my own personal support group where the topic is always one-on-one support for your needs.  We will figure out how to reach more survivors as more information will be released this year at the San Antonio Breast Cancer Symposium in December, so we’ve secured Dr. Fuqua to share the latest Hot Topics for Houston in February 2014.  Thank you.