Dear PAC2 Member,


On March 18, 2011, forty-six representatives from thirty childhood cancer organizations and individual childhood cancer advocates met in Washington, D.C., for a workshop to identify ways to collaboratively harness and focus the collective passion and talent within the broader childhood cancer community. Prepared by the PAC2 Interim Steering Committee, this report describes the outcomes of the March 18 meeting, and lays the framework for how PAC2 will operate going forward.


The Interim Steering Committee would like to thank everyone who joined us in Washington D.C. And special thanks go to Jay Scott from Alex’s Lemonade Stand Foundation for generously underwriting the meeting room and great food that housed and powered the all-day discussion.


While the March 18 meeting was attended by forty-six invited members of PAC2, the membership of PAC2 is over 5,000 and growing. PAC2 membership is inclusive - incorporating any individual or group focused on fighting childhood cancer - this fact did not go unrecognized during the workshop. And so eventually, the intent is to convene larger gatherings where all PAC2 membership is encouraged and welcome to attend.


Mission

PAC2’s broad mission is your mission: finding a cure for childhood cancer as quickly as possible. To better achieve that mission, the goal of the Workshop was to identify collaborative ways to make the work of childhood cancer organizations more efficient and effective.


We again stress that PAC2 does not compete with, direct or duplicate its members’ efforts. When it is better for the childhood cancer community to work together, PAC2 can be there to help. When it is better to work separately, PAC2 doesn’t get involved but will continue to serve to as an outlet to promote those individual efforts. As it has since inception, PAC2 remains and will remain an independent, member-focused organization that supports, promotes and collaborates with any organization that aligns with our mission and ultimate shared goal of finding a cure for childhood cancer.

Member-Centric Service Model

PAC2 will provide the childhood cancer community an array of support services that advance the mission described above. Regardless of how quickly and how large PAC2 grows, those services will be structured around a member-centric model. This model, detailed further below, is reflective of how the childhood cancer community already organizes itself (Community Efforts); where identified needs exist (Service Delivery); and the most efficient, cost-effective ways for PAC2 to deliver its service to those needs (Technology and Infrastructure).


This approach is similar to how other trade and service-based businesses function, and allows PAC2 to expand and scale flexibly in order to meet the need for its services as well as PAC2’s ability to reliably execute.


Community Efforts

During the workshop, PAC2 proposed the following community structure, which reflects how the childhood cancer community (and other disease communities) operates.

PAC2 organizes and delivers its services around verticals of effort that represent how the childhood cancer community operates.

Childhood Cancer Community Efforts

Advocacy & Awareness

Research & Treatments

Patient & Family Support

 

Service Delivery

Also during the workshop, PAC2 described how it would deliver its services, the key areas where a need exists for PAC2 to provide support to the childhood cancer community.

An integrated service delivery structure.
provides and leverages expertise across communities

Integrated Services

Information & Communications

Connections & Collaboration

Training & Best Practices

 

Technology and Infrastructure

The nascent tools that PAC2 currently works with will evolve and grow, driven by the needs of the childhood cancer community and PAC2’s members.

Investment in off-the-shelf web-based software provides the ability to deliver its services efficiently and cost-effectively.

Connected Communication & Collaboration Platform

Web-based Technologies

Meetings & Conferences

Content & Data

 

Workshop Actions Taken

Recognizing that this was our first meeting, there was a great deal of healthy discussion, as there always will be when forty-six passionate, intelligent people talk about childhood cancer. In the end, the workshop attendees arrived at three broad positioning statements that, while obvious, set the tone for the actions decided later in the workshop.

  1. The principle problem continues to be that childhood cancer is severely underfunded, and that more could and should be done by industry, academia and government to fund research.

  2. The underfunding problem is not widely known nor understood: childhood cancer is lacking public awareness in general.

  3. Collaborative efforts within the childhood cancer community can more efficiently and effectively solve the problems that continue to be barriers towards finding a cure for childhood cancer.

 

However, this workshop was not just about talking, but about planning for action. To that end, the following projects were launched:

  1. Creating Hope Act of 2011 Joint Advocacy Project
    All of the Workshop attendees signed a letter of endorsement in support of the Creating Hope Act of 2011. As a leading advocate, Kids v Cancer was given the opportunity to canvass the group for additional support in lobbying various elected officials. For more information, please contact Kids v Cancer’s Anne White at anne@kidsvcancer.org.

  2. Childhood Cancer Messaging and Branding
    A task force, led by Robyn Raphael (Keaton Raphael Memorial) was formed to develop a childhood cancer branding campaign which will include a unifying and consistent message for use by all members of the childhood cancer community. Alex’s Lemonade Stand Foundation will assist with production of a Public Service Announcement that can be easily modified for use by any childhood cancer organization. For more information, please contact Robyn Raphael at robyn@childcancer.org

  3. Childhood Cancer Directory
    A directory of childhood cancer activist individuals and organizations will be developed and accessible through the PAC2 website. This directory can be parsed by several factors including focus areas (i.e. research, family assistance). For more information, please contact directoryproject@peopleagainstchildhoodcancer.org

  4. Childhood Cancer Fact Library
    To assist all groups and ensure consistency and accuracy, a repository will be developed on the PAC2 website for key facts (e.g., how much does the government allocate to childhood cancer research). It’s critically important that we’re all citing the same numbers. PAC2 has already developed a list of key information and would welcome a few people to help vet and synthesize everyone’s numbers. To lead or lend a hand with this project, please contact factproject@peopleagainstchildhoodcancer.org

 

Several other ideas were identified for potential future development. A mechanism for identifying and organizing new ideas, bringing them to the PAC2 membership for review, and ultimately, approval, is being developed.


Kathleen Ruddy of St. Baldrick’s generously offered to have their PR agency develop a press release. The press release will announce the workshop, share the three position statements, and describe the projects launched. It will of course be shared with PAC2 and the childhood cancer community once it hits the wire.

 

The Future

This meeting was the beginning of what we believe will be a durable and effective approach to developing and supporting collaborative efforts within the childhood cancer community. As PAC2 evolves, we ask each of you for your support. It is critically important to recognize that PAC2 is not ‘them’ but ‘you’. If you see value in being part of this movement, you are an ‘owner’ of PAC2. PAC2 will ultimately be as valuable as its owners make it. Much as we call on researchers to work together - our children - those living and those that have gone before us - demand and deserve that we also work together.


Over the next few months, progress will be made on the initiatives above and updates will be provided to you, the PAC2 membership. As the PAC2 membership successfully accomplishes our launch projects, we will collectively decide on what to tackle next. We will also meet, virtually and in person, over the next year.


Thank you for your passion, your dedication, and your willingness to work together to end childhood cancers!


Respectfully,

PAC2 Interim Steering Committee
Bob Piniewski, PAC2
Joe McDonough, Andrew McDonough B+ Foundation
Andy Mikulak, Max’s Ring of Fire



PAC2 Workshop Attendees

"A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has." - Margaret Mead

Danielle Leach 46 Mommas Shave for the Brave / The Mason Leach Superstar Fund
Kelly Forebaugh 46 Mommas Shave for the Brave
Annette McKeon Aimee's Army
Jay Scott Alex's Lemonade Stand Foundation
Amber Masso American Childhood Cancer Organization
Ruth Hoffman American Childhood Cancer Organization
Joe McDonough Andrew McDonough B+ Foundation
Billy Sherwood Arms Wide Open Childhood Cancer Foundation
Dena Scarpelli-Sherwood Arms Wide Open Childhood Cancer Foundation
Caryn Franca Band of Parents
Cris Ohr Bear Necessities Pediatric Cancer Foundation
Rob Whan Caleb's Crusade
Jeremy Bliler Childhood Cancer Advocate
Kris Rech Childhood Cancer Advocate
Steve Green Childhood Cancer Advocate
Vickie Buenger Childhood Cancer Advocate
Warren Brown Childhood Cancer Advocate
Wendy Brown Childhood Cancer Advocate
Maureen Lilly Children's Cause for Cancer Advocacy
Mickey Johnson Cody's Crew
Cindy Kerr ConKerr Cancer
Gavin Kerr ConKerr Cancer
Erica Neufeld CureSearch for Children's Cancer
John Lehr CureSearch for Children's Cancer
Julie Puzzo CureSearch for Children's Cancer
Lisa Tignor DC Candlelighters
Meg Crosset DC Candlelighters
Sandy Barker Gold Rush Cure
Gavin Lindberg Health and Medicine Counsel of Washington
Robyn Raphael Keaton Raphael Memorial
Anne White Kids v Cancer
Nancy Goodman Kids v Cancer
Peter Brown Mattie Miracle Cancer Foundation
Vicki Brown Mattie Miracle Cancer Foundation
Andy Mikulak Max's Ring of Fire
Christine Brouwer Mira's Movement
Bob Piniewski PAC2
Amy Weinstein PLGA Foundation
Kathi Clarke Rally Foundation for Childhood Cancer Research
Ashley Voss Rock Against Cancer
Lisa White Rock Against Cancer
Jane Hoppen St. Baldrick's Foundation
Kathleen M. Ruddy St. Baldrick's Foundation
Melanie Goldish SuperSibs
Carolyn Layton The Matthew Larson Foundation for Pediatric Brain Tumors
JoAnn Romano The Matthew Larson Foundation for Pediatric Brain Tumors
Martin Kleckner The Nicholas Conor Institute for Pediatric Cancer Research
John Bennett The Pablove Foundation
Megan Rudebeck The Pablove Foundation
Jennifer Louis TN Cancer Coalition
Amy Pankratz Wonder Capes

 


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