Senator Reed’s office has asked that the community engage our grassroots in supporting this effort. Specifically, getting advocates to ask their 2 senators to sign-onto the letter.
HOW YOU CAN HELP........
Amy, This was a great letter. Wish I had read it before I sent mine in. I wonder how many of us wrote them from PA? ^^Eli^^'s dad borrowed from mine and got it done too. But how do we engage our families? Thank you for being such a great voice for all of us, the kids and especially for ^^Arden.^^ Wouldn't it be great to hold a town hall here in PA to meet with them? Maybe that would get there attention?
Keep up the great work!
Dear Jason (health care - Senator Hagan)
Dear Jacqueline (health care - Senator Burr)
thank you for taking the time to speak with me briefly on Senator's Reed and Isakson's initiative to garner bi-partisian support for to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012. I care because we lost our 14-year old son, Alex John, to childhood cancer on January 5, 2008. Since then I've co-founded a grassroots advocacy community, People Against Childhood Cancer, or PAC2, in an effort to raise awareness of the lack of funding for childhood cancer research. It has since grown to become a 'town hall' for the childhood cancer community. PAC2 was honored to be invited and attend the briefing to Congress presented by the Pediatric Cancer Caucus, and I would encourage Senator Hagan to join the Caucus (more information on the Caucus can be found here). PAC2 supports the efforts of fundraising groups (we don't raise funds), advocacy groups (we are not professional advocates) and family and patient support groups (sharing information and promoting their efforts).
This unified effort is needed because childhood cancer is the number one killer disease of children today, killing more children than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. A child has about a 1 in 300 chance of being diagnosed before age 20. Even though cure rates have improved since the 50's, we have plateaued on many childhood cancer types, and others remain terribly difficult to treat. Survivors are then faced with a 2/3 change of major, long-term effects from the cure, including secondary cancers, major organ damage, cognitive development issues and others. In short, kid's need us ALL to band together to fight for them.
AJ was diagnosed on Father's Day 2007. (You can read more about AJ here) I knew nothing of childhood cancer. That has changed. Here is a look at current NCI funding, considering the number of years of potential life lost for leading adult cancers and childhood cancers. It shows how grossly underfunded research into America's number one resource, our children, is. Here is a report on what NCI claims to be accomplishing in the pediatric cancer world, with some counter-points that I and many others feel reflect reality. I watched a webcast of Dr. Varmus' recent testimony about NCI and childhood cancer, transcribed it actually. He said that NCI was doing "pretty good" in the pediatric cancer world. I respectfully, wholeheartedly and with every breath I take; disagree.
The NCI is not doing enough to support childhood cancer research.
Senator Hagan can help by supporting the efforts of Senator Reed and Isakson. Attached please find the sign-onto letter expressing support for pediatric cancer programs. The letter should have all the details required. All responses should be completed before June 8. Please reply with confirmation that Senator Hagan will support this effort.
(name and address)
This Senate Health Legislative Assistant List looks pretty current : http://healthyamericans.org/assets/files/Senate%20Health%20LAs.pdf
for some of the names, this directory of US Senate Rural Health Contacts is useful.
Sent email to Meghan Tiara (Legislative Aide to Chuck Schumer <D-NY>) and on-line fax to Deidra Bennett, (Legislative Assistant to Sen. Kristen Gillibrand <D-NY>). The email box for the latter was full.
This being a holiday weekend, and time being short, I grabbed the contacts from this This Senate Health Legislative Assistant List It looks pretty current, but it may not exactly match the information that one may get from the legislator's receptionist. I'll just hope for the best! But, bottom line, we're tawking abt the NY Senators: really reliable allies and fighters for childhood cancer needs. I love New York!!
Update see "FY 2012 Appropriations for Childhood Cancer" Posted by AJs Dad on June 10, 2011 at 5:58pm in PAC2 Commentary and News http://curechildhoodcancer.ning.com/forum/topics/fy-2012-appropriat...
The Senate sign-on letter in support of funding for pediatric cancer programs in FY12 is below. The letter was sent over today to the Senate HHS Appropriations Subcommittee. Only 12 Senators signed on.