Still riding high after the LIVESTRONG Young Adult Alliance meeting!

Heidi Adams — By on November 18, 2008 at 8:16 am


I’m just now coming down from the 3rd annual LIVESTRONG Young Adult Alliance meeting here in Austin last week. It was so great that, after it was all over, I felt the post-event blues that happen after the best weddings. You know, when all your favorite people are in one place and you have this amazing shared experience rallying around a single unifying event, then everyone breaks up and heads back to their homes and lives and reality. Sigh.

I’ll recover, I promise. If for nothing else than to get my ass in gear and working on the monumental challenge we have set ourselves. I’m proud to be the Advocacy co-chair of this incredible group, and take that leadership responsibility very seriously.

To give you some background, the Alliance is a mere toddler in the world of organizations, albeit a precocious one. The idea was birthed in 2004. Subsequently, on the heels of a national scientific meeting hosted by the Lance Armstrong Foundation and the National Cancer Institute in 2006, the Alliance was formally organized as a national coalition (supported by the LAF) to implement the recommendations that came out of that scientific meeting.

There were 44 member organizations when the first Alliance meeting was held in 2006. And now, here we are in 2008 with more than 100 member organizations—advocates, medical institutions, professional organizations, government agencies—all coming together to improve survival rates and quality of life for young adults diagnosed with cancer between the ages of 15 and 39. Check out the member list here.

Lance Armstrong Foundation CEO Doug Ulman kicked us off on Thursday morning with an incredibly personal talk about his own cancer diagnoses (three times!) and growth as an advocate. He challenged us with the idea that if we weren’t setting unattainable goals, we weren’t living life as it should be lived.

Doug is a tough act to follow on any given day, but Olympic swimmer Eric Shanteau was up to the task. He spoke next about his own diagnosis mere weeks before his Olympic dream was to come true, and the struggles he faced with the decision to treat immediately or wait, as well as his challenges in coming to terms with survivorship and moving on. His (apparently even more amazing) dad, currently fighting Stage IV lung cancer, told him “Eric, you have cancer. Cancer doesn’t have you.” A five-month survivor at this point, he spoke eloquently, displaying that accelerated wisdom that often comes with the loss of innocence at the hands of this disease.

Pumped up and inspired, the group dispersed into breakout sessions ready to learn and to work hard. Thursday morning was dedicated to breakouts providing member organizations with useful information to take back to their young adult constituency, such as:

• Resource sharing
• New media projects and tools
• Clinical trials information: new studies, avenues of access, legal info and Institutional Review
Boards (IRBs)

Thursday afternoon was devoted to work within the four task forces: Standards of Care, Science, Awareness and Membership. Each task force reviewed accomplishments in the past year and discussed the work to focus on in 2009, including:

• A huge, honkin’ retrospective analysis of relevant studies to see where young adult data can be pulled out and analyzed for different results when considered by age. (The thought is that cancer is biologically different in young adults and may require different protocols. Current studies in breast and colon cancer suggest this, but we need more evidence to prompt more targeted studies.)

• A working meeting to establish model standards for a quality Adolescent/Young Adult program—not just your basic teen room plopped onto a pediatric ward, or a computer set up in the janitor’s closet on the adult ward. (Right?!)

• An awareness campaign targeting frontline docs—such as gynecologists, college health professionals, family doctors, orthopedic docs, etc.—who are a huge factor in the problem of young adults being the most likely group to suffer a delayed diagnosis.

So after all that work, this group brought their A-game to playing hard Thursday night! We had a dinner cruise on a Town Lake party boat with—drum roll—karaoke. Which is, by the way, my extreme phobia. Can’t do it, no matter how much alcohol is involved. (And believe me, there was a lot of that.) But there were some talented folks there and I am an enthusiastic backup singer. :-)

Friday morning was devoted to wrap-up, then we closed with a fantastic session in unity and working together led by Drum Café. (I heard afterwards that the Hyatt staff was freaking out—120 African drums being pounded in unison make quite a ruckus.) I’d never done a drum circle before and I have to say was rather skeptical, but it was SO COOL and I would do it again in a heartbeat. Hangover notwithstanding.

Looking around me at the passionate and dedicated people in the room, all of us beating drums in unison, I was overwhelmed with the feeling that these people had my back. We all come at the problem in different ways, addressing different needs and challenges, but in the end we all want the same thing: to make the world better for young adults with cancer. And until there is a cure, to make their lives better from start to finish.

Hell, yeah. Let the ruckus begin.

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Still riding high after the LIVESTRONG Young Adult Alliance meeting!

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