Friday, May 2, 2008

Baseball and Congress; ya gotta believe


I'm not much of an athlete, but I've always been a baseball fan. Growing up in the suburbs of New York City, I was fortunate to spend many weekends at Shea Stadium, watching the New York Mets. My parents, like many Mets fans of their generation, had been Brooklyn Dodger fans until the Dodgers deserted Brooklyn for LA. Being a real Brooklyn Dodger fan meant sticking with a team year in and year out, that frequently disappointed. My parents always told me that becoming Mets fans once the Dodgers were gone was logical for two reasons; they weren't the detested Yankees, and there was always hope for a winning season, but they would frequently let you down, like their Dodger predecessors.

I was there, on a very cold October night at Shea Stadium, during the 1973 World Series. It was so exciting, and there was so much hope, with Tug McGraw's cheer of "ya gotta believe." But ultimately the Mets lost the series.

Making change in Washington can be a bit like being a Mets fan. But April 14 and the weeks since, have been a winning streak for childhood cancer survivors and their families. You'll remember from my previous blog that the Children's Cause for Cancer Advocacy had it's first lobby day on April 14. 42 survivors and parents went to Capitol Hill to ask members of Congress to support HR 4450, Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act. The meetings that these advocates made had a direct impact, with 7 additional members of Congress agreeing to co-sponsor the bill since April 14! And, a Senate version of HR 4450 was also just introduced, by Senator Hilary Clinton.

This is really just the beginning for this bill. All of us can make a difference and it will take the collective voices of survivors, friends and families to move this bill through Congress. We have to be patient and PERSISTENT. 42 advocates told their stories, and members of Congress listened. So, we can like those fans who only care about their teams when they are winners. There will be loses, and there will be wins, but "ya gotta believe."

As a side note, since I have been in Washington, DC for almost 10 years, my adopted baseball team is the Nationals (I still root for the Mets too). The Nats started this season with a miserable record of 7 consecutive loses. Now, they won 7 out of their last 9 games.

Tug McGraw had it right.

Wednesday, April 16, 2008

Survivors make a difference on Capitol Hill and even the cynics smile!

Monday was a a beautiful Spring day in Washington, DC and a great day for young adult cancer survivors and the Children's Cause for Cancer Advocacy (CCCA). CCCA held its first lobby day, which brought together 42 survivors and family members meeting with 20 House members or their staffs. The lobby day followed a great weekend of learning, networking and fun - our second Rise to Action - DC conference, held on the Georgetown University campus, and attended by 130 survivors in their teens, 20's and 30's, plus family members.

As a former New Yorker and having lived in DC for almost 10 years, I'll admit a tendency to be a bit cynical (I like to say I'm a realist) about politics and the opportunity for individual citizens to have an impact in an environment that is cluttered with numerous advocates working for lots of worthy causes and professional lobbyists.

But CCCA's lobby day showed, to paraphrase Margaret Mead, that a small group of passionate survivors can go to Capitol Hill, share their stories, and motivate members of Congress to take action. The primary bill that the advocates brought to Capitol Hill was HR 4450, the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act. Several of the meetings that advocates held with members of Congress or their staff yielded commitments to support the legislation. This is just the beginning of a long process, but the voices and stories of young adult survivors created great momentum, and we need to continue building on their efforts.

I'll provide updates as more news on this bill and other legislation important to survivors moves through Congress.

-craig

Friday, March 21, 2008

My very first blog - a bit nervous

Hi,

Craig Lustig here. I've done my best to delay, procrastinate, and avoid this, but my kind co-worker, Jess, has promised me it won't be too painful. Reminds me of what the dentist says before he begins drilling. And I keep questioning who really wants to read what I have I to say.

Let me introduce myself. I'm a 14-year pediatric brain tumor survivor, diagnosed as a young adult. 2 years of mostly unpleasant medical procedures, including a recurrence of the cancer, but I've been fortunate to have good health for the last dozen years.

Like many other cancer survivors I faced the questions of what direction my life would take after cancer treatment and I was deemed "in remission." This second phase of my cancer journey took me from living in New York City, working in advertising to being an active volunteer with several cancer groups, going to graduate school, and ultimately moving to Washington, DC to enter a fellowship program at the National Institutes of Health. Fast forward a bit, I am currently the Executive Director of the Children's Cause for Cancer Advocacy, where I've been for close to 5 years.

My goal is to post a blog once a week, and share something about the work of the Children's Cause for Cancer Advocacy (CCCA). I'll also share recent articles of interest to survivors in their teens, twenties and thirties, and alert you to legislation in Congress, or other activities at the Federal and State level that impacts cancer survivors.

For this to be really successful, I want and need your feedback. What's important to you as a cancer survivor, family member or friend? If you've been part of a CCCA activity, tell me what you liked about it and how we can improve it. What programs, projects or information would you like to see us develop?

Rise To Action - DC is coming up, April 12-13. This conference for survivors and families is a great opportunity to meet and network with other survivors, gather information on a variety of topics, win educational scholarships, and yes, it's fun. The conference is being held on the Georgetown University campus - more details and registration can be found on our website - childrenscause.org.

-craig