A Great Night Out With O.A.R.

Have you ever met a celebrity who talked to you like a real person? How about one who carried on a real conversation with you - not just real, but one with substance? I have. A few weeks ago I met five of them.

The members of Of a Revolution (O.A.R.) - Marc Roberge, Jerry DePizzo, Benj Gershman, Richie On, and Chris Culos - are all normal guys. Oh, excuse me. I meant abnormal - in the best way possible, that is.

Rock Against Cancer was lucky enough to receive tickets for a few young cancer patients and friends for O.A.R.’s show in Raleigh, N.C. August 10 with Citizen Cope. Not only did they give us good seats at the new Raleigh Amphitheater, the band also met with us backstage for thirty minutes before the show. They signed posters for us, gave us t-shirts, chatted and took pictures with us.

The guys were down-to-earth, talkative, and genuine. They were genuinely interested in each kid. Not only that, they were genuinely interested in and appreciative of the work done by Rock Against Cancer.

Unfortunately, some of the kids that were supposed to attend the concert last night had unusually low blood counts and were told at the last minute that they could not go. O.A.R. saxophonist Jerry DePizzo wrote a personal note on a poster for each of those kids to the tune of “We’re so sorry we missed you. Stay strong!” Did I mention that he asks for each of their names as well so that it could be personalized? All the band members signed the posters and gave them to Lisa to deliver to the hospital.

In a long conversation with bassist Benj Gershman, he asked me how RAC got started. As I explained it all to him, he was fascinated. Not to say that I was assuming celebrities would not show care for children battling cancer, but I did not expect it to be this amazing Benj said he definitely wanted to visit pediatric oncology treatment centers next time O.A.R. was in the area. He asked me to take down his manager’s information so that we could stay in contact.

When I told frontman Marc Roberge about my brain bout with brain cancer, he did not hide the surprise on his face. He told me that it was inspiring that someone my age could go through so much. We then just agreed on the fact that everything in this world is a gift.

Before we headed back to our seats for the show, drummer Chris Culos, who had let us play with his dog earlier, gave each of us a set of drumsticks. I still can’t believe it.

The best part of the night? Seeing the excitement on all of the faces filling up the reserved RAC seats when the band personally shouted out to us. Marc said something like, “WE MET SOME GREAT PEOPLE TODAY. TUCKER, RAYSHAWN, MARCUS... THERE IS AN AWESOME ORGANIZATION CALLED ROCK AGAINST CANCER. GO TO THEIR WEBSITE ROCKAGAINSTCANCER.ORG AND SEE HOW YOU CAN HELP!”

Wow. Just wow. These guys get it. They understand the hardships that come to a family when their child is diagnosed with cancer. And they’re helping RAC “make music a part of the cure.” I have so much respect and gratitude for O.A.R. after that night. A tip of the hat to you, gentlemen. You gave some kids an experience of a lifetime that they will never forget.

"A WIN FOR THE COMMUNITY"

On Monday, July 26, 2010, the House Subcommittee on Defense Appropriations recommended a budget for 2011. The proposed budget earmarked $5 million for CureSearch for Children's Cancer.

"This is a win for the community," said Cynthia Duncan, Director of Advocacy, CureSearch for Children's Cancer.

The proposed budget comes as a much-needed reward for many members of the childhood cancer community who traveled to the CureSearch Reach the Day event in June. Hundreds of people trekked around Capitol Hill lobbying Congress to appropriate funds for childhood cancer research.

Advocates made an impact on the Hill by presenting the shockingly low amount of funding appropriated for childhood cancer research since the passage of the Caroline Pryce Walker Conquer Childhood Cancer Act. The proposed $5 million for research is a significant increase over last year's funding.

The budget must still pass the full House Appropriations Committee, the full House and Senate, and be signed by President Obama.

"While we are excited about this development," said John L. Lehr, President and CEO, CureSearch for Children's Cancer, "we must continue to apply the appropriate level of advocacy on the Senate side and then again during the House-Senate conference."

Our lobbying is far from done! Now that an initial bill has passed in the House Subcommittee on Defense Appropriations, we can write letters to the senators and representatives that we met in June to see if they will follow through on their promises. Oh, politics! Simple, huh?

RAC Rocks with DMB in Virginia Beach

Rock Against Cancer had our first "Stars Night Out" in Virginia Beach on Tuesday night. Three young cancer patients and their families had great seats for the Dave Matthews Band concert at the Verizon Wireless Amphitheater.

Black clouds were threatening in the late afternoon, but the skies cleared and the weather cooled for a wonderful evening. The whole RAC group stood from our wonderful seats in the sixth row to cheer on Dave Matthews and his talented band as they opened with "Rapunzel." The kids and families smiled and sang throughout the show and did not even leave our section until DMB finished their encore performance.

The night was a huge success, thanks in large part to DMB for their generosity. It was RAC's first "Stars Night Out" with patients from the Children's Hospital of the Kings Daughters. We are excited to have established a relationship with CHKD and look forward to working with them more in the future.

Feeling the Heat on Capitol Hill

The heat was certainly on as we trekked around Capitol Hill last week. We were eager to get the show on the road to D.C. last Monday as we left Chapel Hill at 7 a.m. When we got to the hotel on Capitol Hill, we gathered our information packets, put on our tags and joined in on some training meetings. Did you know there is a method behind the madness of congressional lobbying? Actually, it makes sense.

The CureSearch team looked out onto a room of over 250 childhood cancer advocates – children going through treatment with their families, families of angels who lost the battle with cancer, survivors – excited to ask for appropriations for childhood cancer research. Their message was simple. Make a lasting impression, but do so professionally. That doesn’t sound too difficult now, does it? Well, to be honest, it is quite hard to hold back tears and anger about lack of funding when you have been affected by childhood cancer.

We were to ask for three main things:

(1) Funding appropriated for the Caroline Pryce Walker Conquer Childhood Cancer Act that passed unanimously in both the House and the Senate in 2008, authorizing $30 million dollar annually to childhood cancer research. In the years since the act passed, we have come nowhere near reaching the authorized amount of funding.

(2) Support for the Childhood Cancer Survivorship Research and Quality of Life Act of 2009.

(3) Support in the House of Representatives for the Pediatric Cancer Caucus.

So, by 5 p.m. the CureSearch advocates were armed with information and tactics to use in meetings scheduled with senators and representatives from the 31 states represented at the event.

Following our meetings, we came together donned in CureSearch t-shirts and green bandanas for a CureSearch Walk around Capitol Hill. CureSearch provided four shades of green bandanas, each representing a different connection with childhood cancer, for walking participants.

The lightest shade represented families of angels who lost their battle with childhood cancer.

The lime green was for children currently in treatment.

The grass green was for survivors of childhood cancer.

The forest green was for friends of someone who has or had childhood cancer.

We did not know what to expect as our meetings started at 10:30 a.m. Tuesday, but boy were we shocked by some of them! In the current state of the economy, it is obvious that money does not grow on trees. There is very little money to be had and the childhood cancer community is in a race with many other worth-while causes to get a handful of what is available.

Our strategy: present the facts with a little emotional connection, too. The North Carolina team traveled to our senators’ and representatives’ offices with the mother of a 16-year-old leukemia survivor, a 2-year-old Wilms tumor survivor fresh out of chemotherapy, the mother of 21-year-old who died after battling rhabdomyosarcoma for three years and a 20-year-old brain tumor survivor to name just a few.

Some representatives were very receptive, including Walter B. Jones and Sue Myrick. Our senators were split on the matter. Kay Hagan was very pleasant and pledged her support in any way she could, noting that it would still be very difficult to get funding. Richard Burr was a politician in true form. He held face with us, but in further questioning about what he had told us, it proved false.

After our last meeting of the day, we put our bags in our cars and drove back to North Carolina. Were we successful? We’ll see when Congress releases the 2011 budget.

And We're Off...

As things are getting rolling at RAC, I’m getting used to life as an intern for a busy non-profit organization. I have contacted event venues and event coordinators, blogged on the organization’s website, written articles for the e-newsletter, and I’ve recently created my personal website. Please feel free to visit anytime at www.tuckerpetty.com.

With the CureSearch Reach the Day event coming up, we are researching past legislation as well as proposed legislation and appropriations that would benefit the childhood cancer community. Lisa White and the other Rock Against Cancer advocates who have attended the event before are aware of how things work on Capitol Hill during the two-day event. Now, I have to catch up and be ready to make the event a success.

It’s crunch time and I have until Monday morning to become familiar with CureSearch, knowledgeable about legislation and to beo share my story with our Congressional representatives.

CureSearch is an organization that funds pediatric oncology clinical trials at hospitals across the United States. It funds the lifesaving, collaborative research of the Children’s Oncology Group, the world’s largest cooperative pediatric cancer research organization, which treats 90% of children with cancer in the U.S.

Thanks in large part to funding from CureSearch, the Children’s Oncology Group’s research has contributed to the outstanding cure rate of childhood cancer today. Less than 10 percent of children survived cancer in the 1950s. Today, the cure rate is almost 80 percent, and CureSearch’s goal is to raise that rate to 100 percent. Those numbers alone should convince Congress to support appropriations to research.

Who would have figured that so much interesting information would be available to me at RAC? OK, I guess that would be obvious.

Another interesting fact: the U.S. Department of Defense has a long history of leadership in cancer research spanning back to the 1940s. The Dept. of Defense has a pending 2011 Appropriation Request for $10 million of funding to support pediatric cancer research and clinical trials. The funding will be used to support and expand upon existing department-supported research, specifically, genome wide screening for therapeutic targets in high-risk childhood cancer.

Armed with that information as well as some about the Childhood Cancer Survivorship Research and Quality of Life Act of 2009 and the Caroline Pryce Walker Conquer Childhood Cancer Act, my colleagues and I will travel to Capitol Hill with a mission to gain Congressional support for childhood cancer research funding!

Fun to Come This Summer!

Summer is coming fast and we here at Rock Against Cancer are busy bees planning a number of events for the next few months! What's the best thing about summer? The music, of course. We've got the ball rolling on a number of concerts for our "Stars Night Out" program in cities from Raleigh to Indianapolis and beyond. These are our main focus right now as we are hoping to bring smiles to the lips and rhythm to the hips of young cancer patients.

We are gearing up for the 10th annual CureSearch Reach the Day event in Washington, DC. On June 21 and 22 RAC founder Lisa White, Ph.D. and other advocates will present members of Congress with the facts about childhood cancer. We hope to impact childhood cancer legislation and government funding for research. Our representatives will present facts and true stories of those who have battled and continue to battle the disease which is the number one disease-related cause of death for ages one to 20. We welcome any stories you would like to share with us about children who have fought or survived cancer. Please email Dr. Lisa White at lisa@rockagainstcancer.org or me at stpetty1@gmail.com to share stories or talk with us to learn more about what we do and how you can get involved!

Stay posted for more information about CureSearch Reach the Day and our other events throughout the summer.

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