Friday, June 5, 2015

ASCO 2015 Part I : Connections

One of the most memorable parts of my attendance at the ASCO Annual Meeting was meeting other patient advocates, ovarian cancer organization representatives and researchers and physicians.

It all began on Friday night when I attended the Focus on Research Scholar Dinner. I was a Focus on Research Scholar in 2011.  It was at that time that I first met Mary Lou Smith and Elda Rainey, Research Advocacy Network founders. It was so nice to catch up with both of them and I was happy to see Alumni Scholars from 2011 at the dinner continuing their advocacy. The class of scholars this year included breast, ovarian, kidney cancers and and advocate for those with brain tumors. The dinner was delicious and it was a special night as we all honored Mary Lou for the Partners in Progress ASCO Award she would be receiving.

Before I left for ASCO I reached out to a few of the other advocates to see if we could meet. I was so happy to meet Janet Daily-Freeman ( #lcsm), Georgia Hurst (@shewithLynch) and Dan Dubin( @AliveandKickn ) in the enormous Exhibit Hall.
Georgia Hurst, Dan Durbin and I meet at the AmbryGenetics booth.

On Saturday evening, ASCO held a "Tweet Up" for the health care professionals  as well as advocates and others tweeting from the meeting.  I was live tweeting from the meeting for the #gyncsm community and this event was a must do on my calendar. I am so happy that I was able to meet so many of the doctors and researchers I interact with on twitter. After a year and a half working with them on  #gyncsm chats,  I finally got to meet health care moderators, Dr Don Dizon and Dr. Merry Markham and Dr Katz whose support of #gyncsm is so appreciated.  Also in attendance were Dr Attai, #bcsm co-moderator, whose warm welcome of me to the #bcsm chat planted the seed to create a chat for gynecologic cancer survivors.
Finally meeting Drs. Markham and Dizon, #gyncsm health care moderators

Late Sunday morning, I met oncologist, Ophira Ginsberg. We also follow each other on Twitter and met through the #gyncsm chat. Ophira's work has concentrated on ways to improve global cancer control and equality in women's healthcare. She has initiated a program of population intervention  and training in Vietnam, Bangladesh, and sub-Saharan Africa. I know that the impact of ovarian cancer as well as other gynecologic cancers is a global problem. There are countries that have 0 CT machines , yes,  you read that correctly ZERO machines.( I think of what might have happened if a CT machine did not pick up my recurrence.) In the future I plan on sharing the work that Ophira and others are doing to improve the healthcare of women with gynecologic cancers worldwide.   

Throughout the meeting I had the opportunity to talk not only to advocates from the US but also advocates from Egypt, Brazil, Nigeria and Japan. Our goals and motivations regardless of disease site or geographic location were the same: to raise awareness, to increase research to find screening tests, to develop more effective treatments and to support survivors. We just have to tailor those goals to our country’s needs. 

I had the opportunity to speak to researchers and oncologists from France, Canada, Netherlands, Belgium and Italy. The poster sessions were the best time to have more in depth conversations with the presenters about their work. I was so happy to see trials designed to included participants and sites in various countries. 

I introduced myself and handed out the #gyncsm business card to many oncologists and researchers at the meeting. But what a nice surprise when Roisin O'Cearbhaill, a researcher from Memorial Sloan Kettering came up to me and said " Hello , I met you at the Kaleidoscope of Hope Dinner. I am so glad to see you at the meeting". 

Yes, advocates are welcome at medical conferences.  

Every Day is a Blessing  

1 comment:

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