T-4 and counting

Four days to go until Rise to Action LA. If you are not familiar with RTA, check out the link I've provided. This is the 6th regional conference for young adult survivors that CCCA has developed, in partnership with hospitals and cancer patient advocacy organizations, and it looks to be the best yet. Registration is exceeding goal, and we have a terrific collaboration with hospitals like Children's Hospital LA and City of Hope, and great partners like USC, WeCan Pediatric Brain Tumor Network, LLS, the Ulman Fund for Young Adults with Cancer and Vital Options. From this response, it's clear to me that survivors and families are hungry for information that empowers them to advocate for their long-term survivorship care, a day that celebrates their survivorship, and builds relationships among survivors and a community interested in making change.

Looking back, what did it take to get here? CCCA's effort in LA began almost 2 1/2 years ago when I met Kathy Riley, a passionate parent of a survivor and advocate at a brain tumor conference in LA. Kathy knew the docs and other staff at CHLA really well and importantly, knew how to get their attention. I made the first of several presentations about RTA to key staff in pediatric oncology. CHLA has tremendous clinical and community programs for survivors, so it wasn't surprising that the initial response to my proposal for a collaboration was...tepid. But Kathy and I didn't give up talking about RTA at to the folks at CHLA. 2+ years later we've developed a strong partnership with CHLA. Dr. David Freyer, Medical Director of the Hope Survivorship program at CHLA has been extraordinary in his commitment to making RTA LA a reality.

In my experience, this story isn't unique. CCCA spends months and months developing relationships that can ultimately build the program. I've come to understand that, if there's reluctance to work with us, it's likely not driven by suspicion or competition, but simply that all the well meaning clinicians, and non-profit professionals are at their capacity taking care of patients and families, and often there are elements of the RTA program already in their institution or organization.

Could this be an easier, or at least shorter road? Well, I do think that there is an increasing recognition of the value of an advocate-driven program, like RTA. And CCCA is small, so perhaps is reasonable to assume we can't pull it off. But, awareness of the program is growing and there is recognition of our ability to lead this effort.

I know that ultimately all of us involved with patient care, pscyhosocial care and advocacy share the goal of ensuring the best outcome for every survivor. In a world of shrinking resources all of us need to be open to the notion that the total can be greater than the sum of its parts, that sharing is caring (as my partner would say), and that we all need to embrace the value collaboration for a greater good.

Hopefully Jess Reamy, CCCA's phenomal Program Associate, who is responsible for much of RTA LA, or I will post a short blog or tweet (I'm still struggling with this concept) with updates over the next couple of days.

You still have time to buy your plane ticket and join us!

-craig