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.

Vote for Rock Against Cancer!

Please vote for Rock Against Cancer to win the Chase Community Giving Challenge here: http://apps.facebook.com/chasecommunitygiving/charities/141708?src=wallpost&ref=mf

September Childhood Cancer Awareness Month

Hi, it's September which means RAC is in full swing with awareness activities. The childhood cancer community has several important initiatives I would like to bring your attention to:
*Tune in to Blogtalkradio.com hosts a show called Not Picture Perfect on Wednesday, September 9th there will be a live 2 hour broadcast dedicated entirely to Childhood Cancer awareness. Gabe will speak about survivorship and his 10th anniversary off treatment coming up on September 13th.
*Rock Against Cancer's music therapy programs will be featured on the Stand Up 2 Cancer online magazine throughout the month along with an Op-Ed piece by PAC2 founder and a piece about three young people currently in treatment check http://www.standup2cancer.org/magazine
*Event Description:

In Jan 2009 PAC2 succeeded in having its question on “Increased Funding for Childhood Cancer” included in the Citizen’s Briefing Book presented to the incoming President. We’ve followed up with written letters and emails. He gets 10 to 15,000 emails and letters every day.
But...he only gets 1,000 faxes a day.....so....
One day...one Time....let’s double that number, triple that number....we can stand out, be heard, if we all do it together!

Let’s simply fax the President and ask for a September ceremony in the Rose Garden honoring children during National Childhood Cancer Awareness Month. All on ONE day. All together.

When – September 3, 2009 – all day
What - A short note faxed to 202-456-2461.

Dear Mr. President:
As the father of a childhood cancer victim I am writing to request that you hold a ceremony in the Rose Garden in honor of September National Childhood Cancer Awareness Month. Every year 12,500 children are diagnosed with cancer, and it is the leading cause of death by disease for children before age 20. 1 in 300 children are diagnosed with cancer before age 20 yet funding and awareness is woefully inadequate. This is not a ‘special interest group’; our community is large enough that our question on Increased Funding for Childhood Cancer was included in the Citizen’s Briefing Book presented to you by your Transition Team, question #5 in Health Care.

The awareness resulting from a ceremony would be a wonderful way to show your commitment to our future; our children. It would be an appropriate time to demonstrate that commitment by announcing full funding of the Carolyn Pryce Walker Conquer Childhood Cancer Act. Thank you.

Please visit the sites mentioned for articles, radio shows and take a few minutes to fax President Obama! Your help will help us Reach the Day when all children will survive their cancer diagnosis.

Thanks as always for your support,

Lisa

Online Auction Now Available

The online portion of the silent auction from the Strikeout Childhood Cancer Night is now available at www.32auctions.com. The auction name is rockagainstcancer and the password is abc123.

Here is a list of items available for bidding:

- One week vacations to: Daytona Beach, FL, Sunset Beach, NC, Lake Cumberland in Somerset, KY, and St. Maartens.
-Weekend stay at the Hilton Garden Inn in Durham.
-In-home wine tasting.
-Tickets to: NASCAR event and the Carolina Ballet.
-Signed sports memorabilia from: Carolina Panthers, Hurricanes, Charlotte Bobcats, St. Louis Rams, Washington Nationals, Cleveland Indians, Oakland A's and Duke University.
-Test prep courses from: Kaplan and Princeton Review.
-Signed fan memorabilia from: Matchbox 20 and No Doubt.
-Gym membership to O2 Fitness.

Sign on NOW and check it out!

A Message from your RAC Intern

I've had the privilege of working for Rock Against Cancer under the leadership of Lisa White, Ph.D, for the past three months. Call me a sap, but I'd like to use this blog post as a way to extend my deepest gratitude to the RAC family, while I still have the chance.

For anyone who may be new to RAC, and just happens to find this blog on our site, I'd like you all to know what a worthy and important cause this is. My dad recently told me that he was always under the impression that one person could not change the world. But, after hearing about the type of work that Lisa and RAC do for kids, he's changed his mind. Although making children happy through music may not be "changing the world," it is changing the lives of these remarkable kids who are faced with challenges many of us have never seen.

RAC's mission to empower children through music may not seem "world changing" at face value, but seeing the smiles on these kids (and their families') faces as they joined the Durham Bulls on the field at the Strikeout Childhood Cancer Night, might convince you otherwise. To make one sick child happy, even for a few hours of Music Therapy, or a night out at a concert or baseball game, is enough to convince me to support this cause. If you need further convincing, check out Leo meeting his idol, Stevie Wonder, through the help of Rock Against Cancer.

All the money received by RAC through donations go directly to supporting kids with cancer. This is a "mom and pop" organization as far as nonprofits go. Lisa makes sure to keep administrative costs at close to nothing (besides things like buying paper and ink and paying a broke college intern) so that the kids see the donations working directly for them in hospitals.

Working for Rock Against Cancer this summer has truly changed my life and the way I see the world. It may sound idealistic, but seeing children half my age and younger, who have lost so much, has really shown me how to put my own life in perspective. Lisa said many times this summer that if nothing else, my internship was entertaining, but I think she can only imagine. From lobbying Congressmen in Washington to creating a music video to Bruce Springsteen's Glory Days, this internship has been rewarding every single day.

Lisa's family's courage has inspired me to become involved in helping children in some capacity in my future career; whether it be through teaching, volunteering or nonprofit work. So, to wrap this up, I'd just like to thank Lisa, and her niece, Ashley, for having so much faith in me as an intern and giving me the chance to really get involved in this organizaiton. I've had other internships where I sat at a computer for 5 hours a day doing "busy work" for a company. Lisa and Ashley empowered me to be a leader and a problem-solver, especially in helping co-chair the Strikeout Childhood Cancer Night.

And for those of you who stumble across this, let me tell you that if you don't get involved in Rock Against Cancer, you are missing the opportunity of a lifetime. Whether you volunteer, donate, or just spread the word, you'll be changing the life of a child with cancer. And when you are dealing in the business of bringing smiles to kids, everybody benefits.

Still hoping to "change the world,"

Jordan Thorndyke
Rock Against Cancer Intern
Summer 2009