Dear PAC2,

Welcome to the first PAC2 Update of 2012. This marks the fifth year that we have shared the amazing events, inspiring people and organizations, and incredible news and stories from the childhood cancer world (Past Updates). We hope that you find them useful, and should you have feedback or input we’d love to hear it at info@PeopleAgainstChildhoodCancer.org.

 

Fundraising

 

 

Research

 

Advocacy

 

Awareness & Other News

 

Family & Patient Support

 

Your Thoughts

  • "It has been over 5 years since my 9 yr old daughter was first diagnosed with cancer (Rhabdomyosarcoma), and never once did I think Why Ishani?" - Longtime PAC2'er Dharshini Wallooppillai asks Why?
  • “NED” they proclaimed and sent us home. Little fanfare, even less preparation....The world seemed changed and yet incredibly the same" - Is Life Post NED Possible?
  • The Huffington Post's Jonathan Agin writes about the Orphan Drug Act, and his daughter - Cancer One War, Less Than One
  • "Every day of my life since March 2005 feels like I'm living in some nightmare or dream but some moments take on an ever more intense flavor of 'surreality'." - Will: 84 days
  • Doctor David always makes sense - Doctor David's Blog: "We need a better test"... or do we?
  • ‎"I’ve challenged myself to not only continue the work of the Jeff Gordon Children’s Foundation and my efforts personally, but to do more because a child suffering from cancer is a child suffering from cancer. The location of the child or their skin color does not matter. They are all innocent children and they deserve the right to live, be healthy and enjoy life. That doesn’t mean we’re in anyway scaling back our support for pediatric cancer care and treatment in the United States. It means that we’re committed to doing more. I hope that you will join me." - Jeff from Jeff's Journey to Rwanda
  • "And yet, more children still die of cancers than any other disease. When will be the right time to conquer the #1 disease killer of our children?" - Kathleen Ruddy, Executive Director, St. Baldrick's Foundation in The State of Childhood Cancer Research Funding
  • "Although I will never know so many things, I am extremely grateful for her life and being reminded of her beautiful spirit everyday as we continue to help children with cancer through the Foundation. We’ve raised more than $50 million for childhood cancer research with the help of others who were inspired by Alex, and each year that we celebrate her birthday, we come closer to realizing my daughter’s dream of a day when kids won’t get cancer" - Liz Scott, Alex's Lemonade Stand Foundation, talks about Alex's 16th birthday and the 6th Lemon Ball where $700,000 was raised to fight childhood cancer - Our 6th Lemon Ball & My Alex's 16th Birthday

 

Barbie, the ACS and Childhood Cancer

An unlikely combo, but one that has generated quite a stir over the past month. Remember that December post about Mattel making a bald Barbie for a little cancer patient? Beautiful and Bald Barbie! Let's see if we can get it made (BBB) became a Facebook campaign that generated huge media attention with its goal of encouraging Mattel make a bald Barbie for children affected by hair loss, including childhood cancers. Here is an example news story from ABC - Support for 'Bald Barbie' Swells on Facebook. BBB recently meet with Mattel and recently reported they were encouraged by the meeting!

During that groundswell of attention, most reports were supportive. Yet, surprisingly, the American Cancer Society decided that they should weigh in on the Bald Barbie movement - Bald Barbie Demand is an Over-Reach. Incredibly, among other gems, they throw out: "Childhood cancer is exceedingly rare."  All we can conclude is that the ACS truly believes that because their contributions to childhood cancer research are just as "rare".

Well, the community had some thoughts for ACS and so did we here. Working Mother.com had some things to say, Bald and Beautiful Barbie Campaign Movement vs. ACS, Mary Tyler Mom wrote about it Barbie v. Cancer and, frankly many members of the community, you, stepped up and protested ACS’s characterization of childhood cancer. It got quite heated and the ACS responded with a post from a more senior employee whose child fought childhood cancer. The back and forth continued, with one consistent theme being the community questioning the ACS’s lack of funding for childhood cancer research.

The updated notes from ACS indicated that in 2011 it contributed $8.8 million to childhood cancer research as compared to $11.9 million in 2010, as we've been told in previous communications. Bottom line: if you want your dollars to go to childhood cancer related funds, you know that ACS is not the answer.

 

Yesterday, 9:30 am Super Bowl Sunday, ESPN pre-game story on Tom Brady, he’s mic'd up, fired up, yelling to this teammates, and losing (maybe?) - "We've GOT to work harder! We've GOT to do more!"  We like that idea and of course, his spirit. But, last night, around 13 hours later, New York Giants coach Tom Coughlin accepted the Lombardi Trophy for the New York Giants.

Thank god that's over! Now Tom can get back to his important job of supporting families and children impacted by childhood cancer. Check out The Tom Coughlin Jay Fund Foundation to assist children with leukemia and other cancers and their families by providing emotional and financial support to help reduce the stress associated with treatment and improve their quality of life.

Mr. Coughlin, thanks for all you do and congratulations on coaching the New York Giants to a victory in Super Bowl Number 46.....(there are no coincidences).

 

And finally…. we believe that thanks should go to Grey's Anatomy for highlighting childhood cancer in a recent episode! This quote from Grey's is THE most "liked" post ever here at PAC2......

"This is not general surgery on a miniature scale. These are the tiny humans. These are children. They believe in magic. They play pretend. There is fairy dust in their IV bags. They hope, and they cross their fingers, and they make wishes, and that makes them more resilient than adults. They recover faster, survive worse. They believe."

 

Thanks PAC2 for believing, and for all you do!

PAC2

 

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