People Against Childhood Cancer (PAC2) Update ~ September 2011

Such vital information to share. Not my words. Just getting the word out. 
Mindi
~Momcologist




Welcome to National Childhood Cancer Awareness Month.
Here’s to a day soon when it’s not needed. Until we get there we fight on and we see hundreds of events and efforts by the entire childhood cancer community going on this month.  Today we’d like to share some news about events in Washington DC this month, along with great news about a cooperative and collaborative effort by the community. 
National Public Service Announcement

Numerous national childhood cancer organizations and dozens of local and regional ones have taken unprecedented steps to collaborate and support the production of a radio Public Service Announcement and the KidsCancerFight.org website. The PSA is running nationwide during the month of September! This project developed from the PAC2 Workshop in March 2011 organized to bring the childhood cancer community together to identify collaborative ways to make the work of childhood cancer organizations more efficient and effective. In the Workshop the membership group (consisting of over 30 childhood cancer organizations) elected to develop a national PSA for use as a call to action in the fight against childhood cancer. The PSA (listen to 8 year old Tony here courtesy of Alex’s Lemonade Stand Foundation) encourages listener’s to visit the website KidsFightCancer.org where they can browse and connect directly with numerous national and local childhood cancer organizations. Please share!

Childhood Cancer Awareness Month
President Obama declared September National Childhood Cancer Awareness Month, as you likely know. Childhood Cancer Awareness Month represents an annual opportunity for supporters nationwide to focus on and bring awareness to the challenges of childhood cancer. This year, there will be a series of events taking place in Washington, D.C. to help achieve our common goal to eliminate childhood cancer. Our organizations have come together to coordinate efforts, educate lawmakers, and ensure that our voices are heard in the nation’s capital.


46 mommas shave for the brave
These ladies, moms of children effected by childhood cancer, stood proud and bald in front of a national television audience on the Stand Up To Cancer broadcast last Fall. This team supports the efforts of the St. Baldrick’s Foundation, and has a long history here at PAC2!   This year they are shaving at Union Station on Wednesday, September 21!  Visit 46mommas.com to learn more about these incredible moms.
Creating Hope Act
On Thursday, September 22nd, Congressman Michael McCaul (R-TX-10) and Congressman G.K. Butterfield (D-NC-1) will be introducing the Creating Hope Act in the House of Representatives.  If passed, this bipartisan legislation would incentivize pharmaceutical companies to develop new drugs for rare pediatric diseases, such as childhood cancers.  Senators Bob Casey (D-PA) and Scott Brown (R-MA) have introduced a companion bill in the Senate. Read more about the Creating Hope Act.
Childhood Cancer Summit
On Friday, September 23, 2011, the Congressional Childhood Cancer Caucus will host the second Childhood Cancer Summit on Capitol Hill. The event will feature a panel of experts speaking on the challenges and opportunities in pediatric oncology drug development. Children’s Cause for Cancer Advocacy (CCCA) is pleased to be working with advocates and Congressional champions to help educate lawmakers and the public about these critical issues. The Summit, which is targeted toward Members of Congress, Hill staff, and advocates, is an educational forum to bring awareness to the unique issues facing children with cancer, survivors, and their families. The event is at the Capitol Visitors Center (CVC) Auditorium on September 23, 2011 from 8:30 to 10:00 AM. The event is open to the public, no registration is required.
Panelists will include: 
  • Dr. Peter Adamson, Chair of Children’s Oncology Group (COG), will discuss reauthorization of the Best Pharmaceuticals for Children Act (BPCA) and Pediatric Research Equity Act (PREA), including his recommendations for improvement of these two laws;
  • Dr. Ron Portman, Development Lead, Pediatric Center of Excellence, Bristol Myers Squibb (BMS) and Chair of BIO’s Pediatric Drug Development Committee, will discuss the pharmaceutical industry’s perspective on pediatric cancer drug development – challenges, process, and recommendations from industry;
  • Dr. Eugenie Kleinerman, Head of the Division of Pediatrics at M.D. Anderson Cancer Center, will discuss clinical trials, effects of adult drugs on children; and
  • Nancy Goodman, Executive Director of Kids V Cancer, will discuss the Creating Hope Act and incentives for pediatric cancer drug development.
Hyundai Hope on Wheels
Following the Caucus, on Friday, September 23, Hyundai Hope on Wheels will hold a Press Conference, open to the public, at which they will make a major announcement on the work that Hope on Wheels is doing on behalf of pediatric cancer. An important highlight of the event will be the recognition of four local hospitals that are September Hope Grant winners: Georgetown University Hospital, Johns Hopkins, Inova Fairfax and Children’s National Medical Center. The ceremony will immediately follow the Childhood Cancer Summit discussed above. Both events will celebrate the progress we have made in fighting pediatric cancer, while continuing to raise awareness around the issue.  This event follows the Childhood Cancer Summit in the CVC and is open to the public, no registration required.
PAC2 Workshop
On Thursday, September 22 PAC2 will hold its second Workshop. The Fall PAC2 workshop will build on the success of the Spring 2011 Workshop by continuing to focus on the issues and opportunities within the childhood cancer community and how our community can collectively respond. The workshop will have three themes:
  • COMMUNICATING: We will update attendees on current projects and discuss existing barriers that the larger group can help overcome – this helps to reinforce one of the core values of PAC2: action.
  • INSPIRING: We will learn from experts outside the childhood cancer community about how other diseases and causes have effectively marshaled resources to help achieve their goals – this helps to reinforce the core PAC2 value of innovation.
  • IDEATING: We will explore pending projects and propose new ones – this helps to reinforce another core value of PAC2:collaboration.
We are honored and thrilled to announce that the Workshop will feature a wonderful pair of keynote speakers: Ronnie Tepp and Michael Manganiello of HCM Strategists, the co-authors of the report Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change. The Wall Street Journal says “[the report] analyzes the factors that helped patient advocates drive research into and drug development for that disease” and stresses the importance of “creating a sense of community among advocates so that different groups are driving towards a common goal”.

Following their keynote, the group will engage in break-out sessions to identify and target fundamental, community-wide issues and opportunities.  Teams from various organizations hope to cooperate to accelerate movement towards our shared goal of a 100% durable cure rate for childhood cancers, while minimizing long-term side effects for patients.

Any questions or comments, please contact us at info@PeopleAgainstChildhoodCancer.org. Thanks for all you do.
PAC2
“A small group of thoughtful people could change the world. Indeed, it’s the only thing that ever has.”  –  Margaret Mead

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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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