RAC Visits D.C.

On June 22 and 23, Ashley (PR&Marketing Director for RAC), Lisa White Ph.D (Founder of RAC) and I (Jordan the intern) went to Washington D.C. to lobby Congress to support pediatric cancer research funding. Last year with the passage f the Caroline Pryce Walker Conquer Childhood Cancer Act, Congress said they would support up to $30million in pediatric cancer research for the next five years. Lisa, Ashley and I along with Tony Covington, a CureSearch employee (pictured top with Jordan and Ashley), and the Sheehans, a family who recently suffered the loss of their six-year-old son to leukemia, made up the North Carolina team. The seven of us spent Monday training to be effective lobbyists. Dr. George Reaman, head of the Children’s Oncology Group, shared some very hopeful updates in pediatric cancer treatments with the group of about 300. We also got to hear from former Congresswoman Deborah Pryce (pictured bottom with Lisa and Ashley) who sponsored the Conquer Childhood Cancer Act after her 9-year-old daughter, Caroline, for whom the bill was named, died from cancer.




Tuesday began with a rally on Capitol Hill where several congressmen and women spoke. The day was then spent visiting several North Carolina congressmen’s offices as well as Senator Kay Hagan’s. The day was at times emotional and overall tiring but we were met with support and positive reception by most of the offices. Our visit was part of CureSearch’s annual Reach the Day event, an event that brings together families, caregivers and researchers in the hopes that we will one day reach the day where all pediatric cancers will have a 100% cure rate. Making sure our government supports pediatric cancer research is one step in the right direction to reaching that day.

Pediatric Cancer Caucus formed by Congressman Sestak

This announcement was made on June 23 at CureSearch's Reach the Day event I attended with Ashley and Jordan. The NC Team had an excellent day on Capitol Hill talking to Senators and Congressman about the need to fully fund the Conquer Childhood Cancer Act signed into law last July. This caucus will allow for more streamlined information to Congressman members about childhood cancer research and awareness issues.

Pediatric Cancer Caucus Announced

Congressman Sestak Announces Pediatric Cancer Caucus Opens childhood cancer rally and will introduce House Resolution for September Awareness Day

Washington, D.C. - Among hundreds of children, parents, nurses and concerned citizens, Congressman Joe Sestak (PA-07) opened CureSearch's "Rally to Reach the Day." The Congressman announced the establishment of a new House Pediatric Cancer Caucus and, as someone who shared the experiences of many attending the event, expressed his hopes for the future of pediatric cancer research and treatment.

"Tragically, cancer is the leading cause of death by disease in children and, although long term survival rates are fairly high, three out of five children suffer from long tem side affects," said the Congressman.

As the parent of a child diagnosed with cancer, the Congressman spoke about the heart-wrenching, emotional experiences that every one of the more than 14,000 families with a child with cancer endures. He also noted that each day, 46 children-more than two classrooms of kids-will be diagnosed with cancer. His daughter's experience and his concern about healthcare in general were, in fact, the main catalysts for his decision to run for Congress.

"I firmly believe that it is only through the collaboration of the government, private organizations like CureSerach, doctors, and the families affected by this devastating illness that we can come closer to finding a cure," said the Congressman. "The establishment of the House Pediatric Cancer Caucus is a significant step forward that will give voices to thousands of sick children and represent the struggles of every family battling the disease."

The mission of the Pediatric Cancer Caucus, which Congressman Sestak will co-chair, is to serve as a clearinghouse for information on pediatric cancer and a bipartisan forum to aid members of Congress in working together to address pediatric cancer. Its goals include increasing funding for pediatric cancer research, encouraging the collaboration between the public sector and private research organizations and supporting the training of skilled pediatric cancer specialists. As the first initiative of the caucus, the Congressman is introducing a House resolution commemorating Pediatric Cancer Awareness Day in September.

CureSearch is a National Childhood Cancer Foundation which works to raise private funds for pediatric cancer research for the Children's Oncology Group, the world's largest cooperative cancer research organization. Within the network of the organizations are more than 5,000 physicians, nurses and scientists. The "Rally to Reach the Day" is an event that draws Congressional speakers to help raise awareness about pediatric cancer.

The Congressman, who has been devoted to cancer patients since he was elected, was recently honored with an award from the Linda Creed Breast Cancer Foundation. The Actions, Commitment and Efforts (ACE) Award is the first of its kind and was given to the Congressman as recognition of his ongoing support for breast cancer patients.

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A "Wonder"ful Night for Leo

I just wanted to share this first hand account of Leo's amazing night with Stevie Wonder in Atlanta last night. Leo is an 18 year old battling a rare form of cancer, Rhabdomyosarcoma.

Thursday, June 25, 2009

Overjoyed

My wife works at Children's Healthcare of Atlanta on the AFLAC Cancer Center. One of her patients is Leo, an 18-year-old kid with terminal cancer, and his dad told her early on that Leo is a huge Stevie Wonder fan.

Beth (the wife) works with Rock Against Cancer, and through their local volunteer and the Atlanta NBC station, she got in touch with Stevie's management ahead of the concert he played here last night. Leo and his family got to meet with Stevie before the show, and not only did Stevie walk out and dedicate the show to Leo, he brought the kid out onstage, sat him down on the piano bench next to him, and kept him there the entire show. We were up on the lawn (the Ampitheater at Encore Park in Alpharetta), and you could literally see the grin on the kid's face from way back there. They also had dinner together after the show.

After the concert Leo's family invited Beth to the after-show party backstage (I tagged along shamelessly), where Stevie played keyboards and harmonica for a good hour, but spent most of his time hanging around with Leo, who by then was walking about six feet off the ground (and on an entirely personal note, watching Stevie Wonder play "Overjoyed" to a small room from a yard away pretty much pegs the cool meter).

There aren't ten big stars in the world who'd do all that. Hell, there might not even be two.

So, to reiterate: Stevie Wonder = Good Guy.

There should be a story about it on the Atlanta NBC affiliate ("11Alive") either tonight or tomorrow.

Thank You!

Rock Against Cancer wants to send a huge thank you out to the following organizations for their donations to the 1st Annual Strike Out Childhood Cancer Night on 8/8/2009:

-Walgreen's is donating bottled water, soft drinks and ice for children with cancer and their families who come out to the game. 

-Cleveland Indians for donating an autographed Ryan Garko photograph. 

-Charlotte Bobcats for donating an autographed basketball and fan pack.  

-Divi Resorts for donating a 7 day, 6 night stay in St. Marteen.   

-Lisa White & Family for donating a week long stay in Sunset Beach, NC.

-Greg Voss & Family for donating a week long stay at Lake Cumberland, KY.  

-Matchbox 20 donated an autographed concert program and publicity photograph. 

-Hilton Garden Inn for donating a 1 night weekend stay with complimentary breakfast. 

-Princeton Review for donating a Graduate Prep class (for LSAT, GMAT or GRE) worth $1,400!

These donations will all help children battling cancer! If you would like to make a donation, please email Ashley Voss at ashley@rockagainstcancer.org.

Luminaria

The Luminaria form for RAC's 1st Annual Stirke Out Childhood Cancer Night is now online. Honor a child you know who is fighting, has survived or has lost a battle with cancer buy submitting a luminaria form and giving a $5 donation to Rock Against Cancer. The Luminaria will be used at the Durham Bull's Childhood Cancer Awareness Night after the game during a special ceremony honoring childhood cancer patients past and present. RAC plans to outline the field with the luminaria in the shape of ribbon. The golden ribbon is the symbol of pediatric cancer. After the luminaria ceremony, fans will be treated to a fireworks display. The entire ceremony should be powerful in its visual effect.

To purchase a luminary for a child you know, please read the directions and download the form posted here. As always, Rock Against Cancer appreciates your support and dedication to our cause!