We realize we have literally hundreds of PAC2 new members, actually, pretty much EVERYONE is a new member!   We just wanted to summarize the idea that got this site started, what we think we should try to accomplish and why......

Background

#1 - AJs Dad got started with the Petition after he saw a Diane Sawyer interview on 20/20 with Randy Pausch, who was living life with cancer.  He recently passed away.  An extraordinary man, he told his views on live and death.  And the world was taken with it.  The book advertised during the show rose to #1 on Amazon and stayed there for months.  Well, after 8 months on a pediatric cancer floor, he KNEW our kids stories were just as good, and they were just as deserving of the attention.

#2 - So in May 2008, he started the Petition to Raise Awareness of Childhood Cancer.  The idea was to collect 1,000,000 signatures and FedX these signatures in boxes to ABC, NBC, CBS and implore them to create a special SOLELY on childhood cancer.   The idea included  creating a book containing the stories from the petition signers, with all proceeds to go to CureSearch. More on CureSearch later if you are not familiar with them. 

#3 - As the Petition started growing, Lori contacted him, and offered assistance. (God knows he needed it!)  As we looked at the petition, we saw how people just wanted to share their stories and how many were supporting this cause or that cause, were part of this group or that group.  Or had their own foundation going.

#4 - We researched reports on childhood cancer.  Reports about the problems.  Why it is under-funded and under-publicized.  We read reports by the National Academy of Sciences, the International Confederation of Childhood Cancer Parent Organizations, the American Association for Cancer Research, CURE Magazine.  Dug into the statistics from the National Cancer Institute and the American Cancer Society and saw where the money goes.  We must have gone to a 1000 websites about childhood cancer.  We spoke to doctors, CureSearch, Curing Children's Cancer Fund and parents. 

#5 - And we came to a conclusion.  That there a literally thousands of organizations and people fighting for this cause.  That the problem is they are all voices in the wilderness, all screaming, but at different times and in different places.  Some are yelling "save me" and some are yelling "help the kids".  So, to the the media, legislators and corporations, it's a mixed message that is hard to understand, and easy to ignore because it's inconvenient and not too loud.  We are all trying to spell out S-O-S but its comes out as X-C-P!  So the resulting funding and publicity is mixed bag too!

It was clear to us that we needed to all YELL the same thing together; as ONE VOICE UNITED, fighting for ALL these wonderful childhood cancer organizations.

#6 - We shared dozens of emails on a daily basis.  Bouncing these concepts and ideas back and forth.  Lori introduced the "paper petition". But, we wanted more, we wanted something where people could come together.  Share ideas.  Share information.  Support and team up on stuff.  And we worked to create PAC2 Version 1.0.   It was painfully difficult to use, you V1.0 veterans will attest to that.  But, we got 200 people to join and participate, so the desire to be part of something was apparent.  So we went back to the drawing board and finally settled on this format for the new site.  Seems to be working.  Much to organize, format this and that, but the basic layout works.

#7 - So, the concept.  Create a space for people; parents, family, friends, kids, survivors, any concerned citizen, to collaborate.  To share and fight together.  To put aside our differences in the specific type of childhood cancer we hate, set aside our differences in geography and which hospital we support, set aside our egos about our own fundraising efforts; in fact use PAC2 to publicize & support them.   To become one loud voice.  Where we can each contribute ideas and let the cream rise to the top.  To fight for the same goals.  For the kids.

Goals

#1 - Cure childhood cancer.  We could stop there, but you know us better than that by now.  Childhood cancer can be cured in our lifetime with more research.  More research can be achieved with more awareness and funding for the Children's Oncology Group (COG), 7,500 childhood cancer experts at 200 hospitals and research facilities. We bet your child was treated at a COG member hospital. COG members have been the primary innovators in new treatments for children with cancer. What COG can accomplish is only limited by funding. 

#2 - So what helps raise funding?  We think the answer is to raise awareness.  American's don't want to hear the facts about childhood cancer, but once they do, the money will flow. So how can PAC2 best help in raising awareness?

a - We can continue to grow and become a larger voice.  We do this through your efforts.

b - We can continue to get signatures on the Petition to Cure Childhood Cancer.  The Petition represents a very serious statement on the state of childhood cancer and the desire for a cure. And it's not just the signatures, it's the stories contained there in.  We seriously doubt that so many childhood cancer stories have ever been contained in one document anywhere, anytime.  It can be quite a compelling pitch to the media.   

c - We support lobbying and letter writing efforts to Congress.  Many of you have already done this for years, traveling to Washington for Reach the Day, and you can attest that this works. 

The PAC2 Model

We, PAC2, consist of parents, friends and family, parent led organizations and other concerned people.  We provide and get support to and from childhood cancer organizations. We will assist them lobbying legislators and corporations and media.

a - We already talked about lobbying Congress.  We will try to help lobby for providing tax breaks and royalty incentives to pharmaceutical companies to encourage research on new pediatric drugs, in addition to direct governmental funding. 

b - The media is an area where, again, the sheer size of PAC2 will matter.  The number of signatures on the Petition will matter.  But we CAN reach the right people.  We can have a Stand Up 2 Childhood Cancer show.  A 20/20 special with Diane Sawyer.  We have to be patient and do our part to grow.  Believe me I know the frustration.  You just have to look to the kids once and awhile to re-charge your batteries.

c - But once the awareness starts, like we described in the "childhood cancer, another inconvenient truth" post, we believe the pressure will be on corporations to help fund a cure for childhood cancer.  It can become the new "Green!".  And this is where the money is. You don't think the $100 million that Stand Up 2 Cancer raised came from phone calls from me and you do you?   Of course not, they had huge corporate sponsorship.   And the money available dwarfs what we can expect from Congress.  That's the yellow funnel with $$$$$$ to a CURE.

d - We saved the best for last.  Those 46 kids in the bottom right.  Ultimately, that's where everything flows.  That's the real "background" and "goals" of PAC2.  To drop it from 46 to 0. 


AJs Dad and Lori
Co-Founders, PAC2


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I need to vent. Yesterday, my 8-yr-old daughter, Desiree ( big sister to Vinny who is battling Rhabdo) came home from school and in her school folder was a big flyer that goes out to 1,300 children in HER school alone plus every school in Forsyth County.... and it said "Help Me Stay in School! Graduation Awareness Week September 7-13, 2008". Okay, I had no idea it was Graduation Awareness Week, and that 3rd Graders are being told it is Graduation Awareness Week... Were these 1,300 kids told it is Childhood Cancer Awareness Month????? Sorry to vent. Why isn't our Cancer Awareness getting this kind of attention?
I know I'm a little late getting to reply - I just joined yesterday though! But I agree with Sarah, it really makes me MAD! It is out of our control as to our child being diagnosed with cancer but it is completely up to the parent and child to get them to that point of HS graduation! What about CURING CHILDHOOD CANCER SO OUR CHILDREN HAVE A CHANCE TO GRADUATE????
Sarah,
I happened to run across this posting that you did in Sept. It's ironic that this month St.Baldricks had it's response with it's school bus picture. Not to diminish the need for Graduation Awareness wk. but what a powerful visual tied to both causes huh?

AJs Auntie
I tried to get our school district to get involved this cause, but they are so set in breast cancer awareness, they won't even listen. They were very supportive with us pulling Travis out of school when we went to St. Judes, then to Cincinnati for Danielle, but they won't do anything to bring awareness to the community. I guess if it's only one family, they think it wont happen again to another, and I pray to God daily that it wont. Our community was without power for the past 5 days, and to listen to people complain just drove me crazy. To me, it was a time for family. There is no tv, no radio, no water, nothing except family. I enjoyed every minute of it, except not flushing :) If people lived through what we have, there would be no complaining about no electricity. Ever since Danielle was dx with Wilms, our Family saying has been "Suck it up and Deal with it". Sounds harsh, but, thats what we have to do on a daily basis. I we can do anything at all, let us know.
Bob, you are doing an awesome job with PAC2! I believe that when we have CureSearch Walks all across the country with major corporate sponsors that we all will see more mainstream awareness. Alex's Lemonade Stands and St. Baldrick's are doing it, too. PAC2 is a place where we can all come together and network. The day will come. With enough funding for research, childhood cancer can and will be cured for all of the kids. All of our efforts are increasing awareness. All of our efforts are increasing funding for research. PAC2 is great!
Politics ain't it great??? President Obama is pushing healthcare reform that could really be detrimental to children with cancer because it is a system of waiting for treatment, which is the worst for cancer. Aj's Dad and Lori I applaud you for all of your work on Childhood cancer awareness and I hope I can do something in my little corner of the world to make people aware of thie hideous beast cancer!!! Thank you!!

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