At first, I struggled to keep up with the scientific jargon being presented at a cancer conference, but eventually I hit my stride and now I leave these events with a renewed sense of inspiration.
These are my steps to becoming an advocate: First I was a caregiver to someone with melanoma. Then I was a survivor, then volunteer, then full-blown advocate. Everyone’s path to advocacy is a personal one, but there is usually some portion of the person’s life touched by whichever cancer they are drawn to advocate for. That path will often present opportunities to learn.
It is important that we do not pass these up and use them to their fullest potential. Sometimes it might be just a simple conversation with another advocate that can take place at a symposium, conference or scientific retreat. These can be live, virtual or even prerecorded.
The longer I have done this, the more I realize how important it is to take full advantage of these events. At first, I felt very out of place. I’m a layman by definition, having only a high school diploma as my highest education. Then came mycareer as a blue-collar worker, never owning a suit or even slacks. I've never seen the inside of an office. Travel was never more than a few hundred miles from home, and I have never been on an airplane.
How things can change.
Often the terms and presentations at these conferences went over my head. The people I met were well-educated. It took some time for me to adapt through taking notes, reading articles and books, and basically self-educating myself. Then, as time went on, these events became a second home for me as I developed friendships and relationships with people I would never have met had I not chosen this path.
Over a dozen years have passed since I first stepped into advocating with volunteer work. I just returned from Washington D.C. from my fifth attendance of the Melanoma Research Alliance (MRA) Scientific Retreat. This was my third trip there because the last two years were virtual. The MRA has taken to heart the importance of advocacy with their Advocate Exchange program and the first half day of the retreat is set aside for us. Once the research presentations started, I would say that about 70% of the content still went over my head. But with diligent note taking, I obtained vital information that I was able to bring back and use when advocating.
Between the presentations and the roundtables, meals, poster sessions and social interactions, the subject matter can be widely varied and dynamic. You will never know what you will come across. Attendees learn that these researchers are real people with the same everyday concerns. You might be speaking to someone at breakfast about how we prepare dinners for the family, and that afternoon realize they are the ones presenting the complicated chemical balance of cellular manipulation.
During a poster session this year, I listened as a biologist was having a discussion with a visiting chemist. While these are widely different scientific studies, they spent an hour figuring out how their research meshed on a chemical level. I listened as they worked on translating the two scientific languages so the research could be understood and used by both.
Most advocates feel burnout at some time, plugging along and sometimes feeling that they are hitting their head on a brick wall. But events like this are beneficial, even beyond the information they offer. Cancer conferences renew inspiration. I always leave feeling energized and ready to fight for whatever project I am currently involved in.
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