PAC2 Update - September 2013

Dear PAC2,
September was National Childhood Cancer Awareness Month (NCCAM). In our opinion this year the number of news stories, buildings and bridges shining in Gold, awareness events and fundraising events was the highest we’ve seen in the six years we’ve been around. This update will highlight the efforts of many who contributed to this noticeably louder voice the childhood cancer community spoke with this September. Our thanks to all of you.
Our community continues to grow by about 15,000 moms and 15,000 dads each year. And yet we still don't see the level of awareness we all want so desperately for our children; or more importantly a cure. Let’s recall that it took breast cancer advocates over 25 years of hard work before we were all exposed to pink penalty flags being thrown by NFL referees on nationwide broadcasts.
But through both the individual efforts of folks and organizations like those in the stories below, and, through joint, coordinated actions, the childhood cancer community will continue to get stronger, louder and more unified each year. Here’s our recap of some of the incredible and important ways the childhood cancer community got stronger, louder and more unified in September 2013……

AWARENESS

Each year the President proclaims September as NCCAM. Same this year, except the Administration also took the time to respond to an online petition that requested the White House be lite in Gold in honor of September and the kids. Unfortunately, they decided that they would be unable to light the White House gold, you know, like they light the White House pink in honor of breast cancer awareness month. A very disappointing and frankly surprising response to the WethePeople.Gov petition, which exceeded the number of signatures required. While we doubt the decision was passed up to the President, we do know that Paulette Aniskoff, Director of the Office of Public Engagement made the announcement (for you tweeters, that’s ‏@PAniskoff44).

So, instead, the community stepped up and helped DC see Gold itself! The month kicked off with CureFest in Washington, DC. CureFest was a collaborative awareness event that saw support from over 50 childhood cancer organizations and hundreds of kids, parents and advocates! This effort was spearheaded by The Truth 365 and Journey 4 A Cure and our thanks and admiration to them!
After two years of effort by a dedicated group of individuals and organizations, the Coalition Against Childhood Cancer (CAC2) was launched! PAC2 is proud to be a Founding Member of CAC2! CAC2's primary values are to put the children and their families first in everything we do and to support organizations active in the fight against childhood cancer. We will support, not compete with, our member organizations and the childhood cancer community through action-oriented, member-directed projects. Visit www.CAC2.org for more info. In September, CAC2 published a September Event Calendar/Map showing events nationwide. Over 50 organizations participated and nearly 500 events were listed! That’s a significant increase over the events PAC2 collected last year!
Another sign of progress is the results of this survey. Adults across the U.S. rate childhood cancer as their top priority for research into improving children’s health, according to a new University of Michigan C.S. Mott Children’s Hospital National Poll on Children’s Health. In this latest poll, 76% of adults rated research into childhood cancers as “very important.” That was followed by diabetes, with 70% rating it “very important” and birth defects or other genetic problems with 68%.

“So many people know a child or family touched by childhood cancer,” says Matthew. Davis, director of the C.S. Mott Children’s Hospital National Poll on Children’s Health. “It remains a leading killer of children under 18 in the United States. The public clearly ranks research into cures and treatments for these often deadly cancers as a top priority.” Top public priorities for children’s health research: cancer, diabetes, birth defects.

Our buds at A Day of Yellow and Gold to Fight Childhood Cancer worked magic in September. Tony, Cole’s Dad, fought hard with other volunteers to have buildings, bridges, battleships and other landmarks lite in Gold. There were also groups from Ireland, Australia, Switzerland, and Canada that joined the mission and had a great deal of success in getting gold displayed in their countries.
Gold in September (G9) is another group making huge strides in awareness. The concept for the G9 Childhood Cancer Project was created by Annie, an 11-year-old who saw the nation turn pink in October and became determined to turn the world gold in September for kids battling cancer. Annie said, “When a child is diagnosed with cancer it affects the family and the community. It's devastating. My goal is to get everyone thinking about and wearing gold in September so we can bring an end to childhood cancer.”
States also were targeted by many groups and advocates. Best info right now is that 41 states governor’s agreed to declare September as Childhood Cancer Awareness Month: New Hampshire, Massachusetts, Maine, Illinois, Iowa, Nebraska, Texas, New Jersey, North Carolina, Pennsylvania, Kentucky, Wisconsin, Oregon, South Carolina, South Dakota, Maryland, Oklahoma, Tennessee, Virginia, Rhode Island, Washington, New York, Missouri, Utah, West Virginia, Alabama, Michigan, Arkansas, Mississippi, Montana, Arizona, Ohio, Alaska, Florida, Georgia, Minnesota, Connecticut, Vermont, Hawaii, Idaho, and Louisiana.

Super Bowl Champion with the New Orleans Saints, Scott Fujita is now a broadcaster for FOX Sports and totally gets it....Thanks Scott! Getting behind childhood cancer fight.
The fine folks at World Wide Motion Pictures Corporation, producers of Ways to live forever have teamed up with Johns Hopkins Medicine and have produced a short video. The movie screenings this weekend can be found here.
This title described many locations: Towers glow gold in honor of Childhood Cancer Awareness, a cause close to many families
One Direction joins the fight on behalf of 4-year old Kelli Smith. Wall signed by One Direction in charity auction.
More and more professional athletes are becoming involved: “After the World Series, you’re thinking, ‘I am the man. I am on top of the world. I friggin’ won the World Series, and this is the greatest thing ever,’” Motte said. “A day later, up the street five minutes, there is someone finding out that their child has cancer. This is happening on a daily basis. On a daily basis families are finding out the worst news they ever could get about their 8-year-old son.....that’s when it hits you.” St. Louis Cardinals closer Jason Motte. Motte is on a mission.
U.S. News and World Report on Smashing Walnuts and childhood cancer: Smashing Walnuts: The Fight Against Childhood Cancer. Child cancer rates are growing, yet experts can’t explain why. Gabriella Miller is one of the unlucky ones.
No matter what team you're rooting for ya gotta thank AJ for his efforts to raise awareness of childhood cancer. AJ McCarron is the QB for the #1 ranked Alabama Crimson Tide. AJ - "I'm playing this game and wearing this bow tie in honor of Childhood cancer awareness month. #hatecancer".
Jay Scott, Alex’s Lemonade Stand Foundation - Allowing a Child's Dream to Take Shape - Childhood Cancer Awareness...

PEDIATRIC CANCER CAUCUS

The 4th Annual Pediatric Cancer Caucus was held in DC on September 19, 2013. The Caucus brings together many great, diverse minds all focused on curing childhood cancer as fast as we can. Speakers and guests include:

• Congressmen Michael McCaul and Chris Van Hollen, co-chairs of the Childhood Cancer Caucus
• Dr. Crystal Mackall, Chief of the Pediatric Oncology Branch at the National Cancer Institute (NCI)
• Dr. Peter Adamson, Children's Hospital of Philadelphia and Chair of the Children's Oncology Group
• Dr. Patrick Leavey, Associate Director of Clinical Affairs for the Childhood Cancer Program at Children's Medical Center Dallas
• Dr. Kim Kramer, Head of Innovative Drug Development at Memorial Sloane Kettering Cancer Center
• Dr. Andrew Litt, Chief Medical Officer at Dell Services Healthcare & Life Sciences

Many groups were in attendance, including; The Andrew McDonough B+ Foundation, St. Baldrick's Foundation, KIDS V CANCER, Children's Cause for Cancer Advocacy and many others, including members of the Coalition Against Childhood Cancer (CAC2).

The evening before, may attended the reception in honor of the Childhood Cancer Caucus!! Special thanks to the Event Partners: Alex's Lemonade Stand Foundation, The EVAN Foundation, The Andrew McDonough B+ Foundation, The Carson Leslie Foundation, the Children's Cause for Cancer Advocacy, Arms Wide Open Childhood Cancer Foundation, American Cancer Society Cancer Action Network - ACS CAN, Children's Brain Tumor Foundation, and Pediatric Brain Tumor Foundation. Truly an honor to work alongside these organizations and the other partners to unite our voices for children with cancer.
Here is the Introduction by Congressmen McCaul, Van Hollen and Rohrabacher.
Peter Adamson once said to Congress ~ "I realize passing legislation is difficult and complex. But it is no more difficult and complex than what children with cancer face every day." Here's what he said this year: Peter Adamson, MD, Chair of Children’s Oncology Group

Did you know that one year after passage of the Creating Hope Act (thank you to all of you that took action to support the legislation!), at least four pharmaceutical companies have applied for designations for CHA vouchers with FDA, and that FDA has already authorized one voucher? Listen to our bud Nancy Goodman, founder of KIDS V CANCER tell you all about it at Nancy Goodman, Kids v Cancer
We’ve told you all about Hyundai Hope On Wheels, right? But did you know that for the last three years they've been very active in DC at the Pediatric Cancer Caucus advocating for our kids, too? Thanks for all you do Zafar Brooks and everyone at Hope on Wheels!!

STORIES

Words that every teen diagnosed with cancer (and their parents!) want to say (and hear!): "Now, at age 24 she is cancer free and getting ready to graduate college." - Childhood Cancer Survivor Spreads Hope.
College students at the University of Texas reflect on their personal experiences with childhood cancer.
While we give statistics all the time, we should never forget that.... Children ≠ Numbers.
Awareness Fact - "Indy asked me, 'mom, how many days until I die?'"
Marlo Thomas - "the true heroes in this battle are the kids themselves." - Kids and Cancer: This Is What Progress Looks Like.
So many of our families have to try and make sense of love and loss. Here is one that emphasizes the love side of the equation. Love and Loss at One Year.
"So when people ask me why I do what I do, it’s an easy answer. It’s for the kids. It’s for Brandon. It’s for Cory. It’s for all the kids I get to take care of. I am lucky to have this job and get to be around these kids and their families every day." From a Pediatric Cancer Nurse: “Why I take my work home?”.
During my Oncology fellowship in the late 1980s, I was caring for a 17 year old who was the only child of two holocaust survivors. His cancer had recurred, and after years of fighting he was now slowly dying. He was a tremendous young man, mature beyond his age. The kind of young man whose only concern was how his parents would survive without him there to care for them. I trained at a center that had the pediatric hospital connected to the adult hospital. During this time, my own mother was in her terminal phase of breast cancer, and I would spend nights in her hospital room. One evening, I left her room to go back to check on my patients. When I went to see this 17 year old, he and his family asked if they could pray for my mother. More than 25 years later, I am still in awe of the depth of kindness and humanity of this family. How could this young man and his family, despite all the suffering they had seen, still be so giving to others? It is this type of compassion for others I see almost daily in the children and families we are so honored to care for. Dr. Stew's Story: What Not to Ask Me At a Party