Report on the 2nd PAC2 Workshop - September 2011 - Washington, DC

Dear PAC2 Member,


Earlier this year, we set out to help further collaboration efforts across the childhood cancer community. Responding favorably and enthusiastically, various stakeholders met in March 2011 for the PAC2 Spring 2011 inaugural workshop, and launched collaborative projects in the areas of awareness, advocacy and information sharing. We reconvened at the Fall 2011 workshop in Washington, DC on September 22, 2011 where the leaders of these initiatives reported on their team’s accomplishments and the entire group discussed future collaborative efforts. So that you can keep up with these developments, we have prepared this synopsis of the recent workshop.

 

The Fall meeting would not have occurred without the generous support of Alex’s Lemonade Stand Foundation, the American Childhood Cancer Organization, The Rally Foundation for Childhood Cancer Research, CureSearch for Children's Cancer, and the St. Baldrick’s Foundation – so, we’d like to highlight these organizations’ support and express our deep appreciation.

 

Synopsis and Highlights

 

Shared community news included:

  • The Creating Hope Act legislation was introduced into the US House of Representatives on Friday, September 23.
  • St. Baldrick’s and Rally Foundation recently announced an innovative fund-raising collaboration.
  • Childhood Cancer Charities Unite (C3U) and PAC2 announced intentions to merge their efforts to create an even stronger coalition / network for collaboration across the community.
  • The Children’s Oncology Group (COG) announced the establishment of a new foundation to help support and expand the COG’s ability to deliver on its mission to find cures for all childhood cancers.
  • The 2nd Congressional Childhood Cancer Summit was held on Friday, September 23.
  • Hyundai Hope on Wheels awarded grants to local hospitals after the Caucus.

 

Reminders about PAC2:

  • PAC2 is action oriented, inclusive and collaborative.
  • PAC2 is intended to "harness our strength as the most passionate people" and achieve common objectives in the areas of: research and treatment, patient and family services, advocacy and awareness.
  • PAC2 can be thought of as the NATO of childhood cancer organizations, helping to optimize coordination around shared objectives while respecting the sovereignty and identity of each individual member.
  • PAC2 does not direct what organizations do; rather, it promotes what organizations do.

 

Special Guest Dr. Peter Adamson, Chair, COG spoke and provided background on establishing the COG Foundation:

  • New discoveries need to be turned into cures. This will require increasing involvement from pharmaceutical companies, support from the NIH, and strong voices in the community to raise awareness and help drive the agenda.
  • Because COG cannot do this alone and because it is uniquely positioned to partner with and engage the community it has formed a foundation to tackle this problen and deliver results.
  • By partnering with as many organizations and individuals as possible, COG will expand its funding sources well beyond the federal government for its efforts, crucial, because federal funding is expected to decrease given the country’s fiscal situation.
  • COG Foundation currently does not have any employees and was not established to start a grassroots movement. Rather, it will be set up to allow resources to be directed efficiently to where the best research opportunities exist.
  • COG Foundation will help direct funds that are raised in the community to help focus research efforts “with no strings attached.”

 

Existing PAC2 projects were then reviewed. The team leaders and their members deserve our thanks and praise for giving their valuable time to make concrete contributions for the betterment of the entire community.

Advocacy: Creating Hope Act – Nancy Goodman, Kids v Cancer

Nancy explained the Creating Hope Act (CHA) which seeks to solve the problem that market incentives do not exist in private industry for the development of childhood cancer drugs - only 1 FDA drug has been approved in the past 20 years (clofarabine, for acute lymphoblastic leukemia) and zero legislative efforts have been funded. Under the CHA if a biopharmaceutical company or academic institution develops a childhood cancer drug and receives FDA approval, then the company will receive a voucher from the FDA to obtain priority-review status for a more profitable drug (bringing the more profitable drug to market more quickly). This provides incentive to industry and DOES NOT require appropriations (taxpayer funding)!! CHA has bipartisan support and now the community, through families and friends, needs to contact Congress to urge its support.

Branding and Messaging – Robyn Raphael, Keaton Raphael Memorial

Robyn reported on this project which included efforts by numerous national childhood cancer organizations and dozens of local and regional groups. These groups took unprecedented steps to collaborate and support the production of a radio public service announcement and the KidsCancerFight.org website. The PSA ran nationwide during September, National Childhood Cancer Awareness Month, and the Task Force is preparing recommendations for Phase 2. The KidsCancerFight.org website provides visitors the opportunity to support all types of childhood cancer organizations, national and local. Currently around 50 member organizations are listed and new orgs are welcome! A special thanks to Robyn Rapheal, Jeremy Bliler, Vickie Buenger, and Gillian Kocher for their work on the PSA and website. You can listen to the PSA by clicking on Tony's picture...

Fact Library – Erica Neufeld, CureSearch for Children's Cancer

Erica reported on this valuable project that also included the efforts of many, such as Kathi Clarke, Kelly Forebaugh, Jane Hoppen, Annette Logan, and Annette McKeon. The initial phase was to develop an accurate, concise set of 'fact' regarding childhood cancer for use by the entire community. Examples include: 13,500 children under the age of 20 are diagnosed in the US annually and 175,000 are diagnosed worldwide; the incidence of childhood cancer has increased 21% in the last 36 years; and 350,000 childhood cancer survivors aged 18 to 45 are alive today. PAC2 will be publishing the Fact Library shortly, and will add updates as the team develops additional data.

Childhood Cancer Organization Directory – Andy Mikulak, Max's Ring of Fire

Andy described the Phase 1 effort to develop a comprehensive national database of childhood cancer organizations. Once we have collected a representative group of organizations; we will proceed with creation and publication of the directory on the PAC2 website for use by the entire childhood cancer community. Ultimately the list will be searchable and sortable by various criteria (e.g., location, service). Currently approximately 80 organizations have provided information.

Key Note: HIV/AIDS Advocacy as a Model for Catalyzing Change Advocacy

We were honored to host a wonderful pair of keynote speakers: Ronnie Tepp (HCM Strategists) and Michael Manganiello (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, tries to figure out whether there are lessons to be learned for other disease advocates.” and stresses the importance of “creating a sense of community among advocates so that different groups are driving towards a common goal”. Ronnie and Michael both invested significant time and effort and we greatly appreciate their participation!

They stressed that one common objective united the HIV/AIDS advocates: increasing federal funding for research to find new treatments for the disease.  The level of frustration in that community was extremely high, but by  banding together and focusing their efforts, they harnessed researchers, funders, and patients to change policy. The movement changed not only research but also government priorities.  The model is still relevant and can help provide a road map for today. Having a singular focus could also be critical for the childhood cancer community.

There were 5 Key Elements of HIV Activist Model:

  • Attention - The American public probably believes fear was the tactic – but it wasn't the entire solution. Activists taught that sometimes it requires making people feel uncomfortable; groups develop sophisticated strategies working within the system, without challenging the system; organizations work for goals and long-term relationships, the notion of meeting with someone is not necessarily engaging someone. It is important to remember it was at a time without social networking and media. Remember: Today's social media is a way to communicate, not necessarily connect.
  • Knowledge and Solutions - Activists did their homework and knew what to ask for; i.e., requesting clinical trials. Most groups could recall a specific meeting with the group that changed their view to get them on board, which opened the door for meaningful engagement – the patient expert. If patients engage in a productive way they must get smart, organizations must get their advocates informed.
  • Building Community - Community offered individuals a place for people to direct their anger. Regardless of the tools you use to create a community, you need to find a way to make meaningful connections.
  • Accountability - Attention + smart + demands and strategy = activists could hold people accountable for complying with demands. What is the question? What is the starting point?
  • Leadership - They felt fortunate to have leaders in Congress whose goals aligned with theirs. Leaders in HIV movement were “regular people” who could inspire and provide a vision in crisis. Strong leadership on the outside to stand up and demand that leaders on the inside do the right thing. Many leaders with many different skill sets worked together.

After the presentation, workshop participants had an open discussion with Ronnie and Michael and while the conversation was wide-ranging, several key thoughts emerged:

  • Federal Aid - Congress doesn't want to tell the NIH/NCI what to do. The problem may not be with Congress, it may be with the NCI. Our science is not peer-reviewed by pediatric specialist researchers; it is looked at by adult cancer researchers. Congress needs to actually understand the problem and the anger / frustration within the childhood cancer community. Developing strong relationships is important.
  • Community - How do we harness the anger and frustration without being perceived as exploiting the children? Outrage is necessary but not sufficient. Where is the line between distasteful and accomplishing what needs to be accomplished?
  • Plan - The childhood cancer community needs a clear, simple plan – similar to the 10-point plan of AIDS/HIV movement! If you give people something truly meaningful to do, they are more likely to follow through.
  • Awareness - How did you get critical mass from people who didn’t have HIV or know about HIV? – Education, so much myth, stigma, lies, judgments on being gay, more people with HIV who were willing to talk, etc. Watershed moment: when Elizabeth Taylor stood up. What's childhood cancer's watershed moment?!

The key note address and discussion was very thought-provoking for all. The childhood cancer community faces some similar challenges and the ideas from the talk will help guide future efforts. Our thanks again to Ronnie and Michael.

 

Breakout Sessions

Following the keynote, the group engaged in break-out sessions to identify and target fundamental, community-wide issues and opportunities. Groups focused on either research and treatment, awareness and advocacy or family services. The groups brained stormed further possible collaborative opportunities, but these are on hold as we collectively think through our future vision (see below). 

 

We'd like to thank everyone who attended the workshops and took part in the spirited discussions. We recognize that your time is valuable and an extra trip to Washington is expensive. However, this in-person participation is key to relationship building and focusing collaboration efforts for the community.

What Can I Do?

Right now there are three specific areas where we ask for community participation.

  1. The Creating Hope Act needs your support. Visit Please support the Creating Hope Act to add your voice!
  2. MyChildhoodCancer.org is an ongoing ALSF project that will create a database of family experiences and needs. Click the link to participate.
  3. Groups wishing to be included in the Childhood Cancer Directory should provide information on their foundation by visiting: PAC2 Childhood Cancer Directory

Thank you for your help on these important projects.


What’s Next?
Perhaps the greatest accomplishment coming from the two workshops is the overwhelming consensus that collaboration is not only possible, but very desirable and something we should continue to strive for. As you can imagine, these collaborative efforts are not without complications. But the group collectively agrees that the complications can be addressed if we plan and work together.

Therefore the next step, based on stakeholder feedback, is to develop a business plan to formalize the structure of these collaborative efforts, ensuring a common mission, accountability and sustainability. Like we’ve always said, our members are PAC2. To that end, numerous stakeholders representing research/treatment and family service organizations, advocacy groups as well as other community representatives will be collaborating over the next few months to work through the process of transparently designing and formalizing this coalition that will serve the entire childhood cancer community. Stay tuned for updates!

 

Thank you PAC2!

PAC2


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

 

Meeting Attendees:

Name

Organization

Amber

Masso

American Childhood Cancer Organization

Amy

Bucher

Childhood Cancer Advocate

Alex

Weinert

Crush Kids Cancer

Andy

Mikulak

Max's Ring of Fire

Bob

Piniewski

PAC2

Carol

Pasqual

The Butterfly Foundation

Christine

Brouwer

Mira's Movement

D'Ann

Long

Starlight

Dave

Smith

Special Love for Children with Cancer

Dean

Crowe

Rally Foundation for Childhood Cancer Research

Dennis

Langbein

The Lily Fund

Donna

Ludwinski

Solving Kids Cancer

Erica

Neufeld

CureSearch for Children's Cancer

Jane

Hoppen

St. Baldrick's Foundation

Jenn

Flynn

Kids v Cancer

Jennifer

Louis

TN Cancer Coalition

Jeremy

Bliler

Childhood Cancer Advocate

Joann

Romano

Matthew Larson Foundation for Pediatric Brain Tumors

Joe

McDonough

Andrew McDonough B+ Foundation

Joseph

Fay

Children's Brain Tumor Foundation

Karla

Flook

Colorado Kids Cancer Association

Kathleen

Ruddy

St. Baldrick's Foundation

Katie

Wilson

Andrew McDonough B+ Foundation

Katy

Harty

The Jeff Gordon Foundation

Kris

Rech

Childhood Cancer Advocate

Lauren

Neff

Children's Cause For Cancer Advocacy

Lisa

Tignor

DC Candlelighters

Lisa

Towry

Alex's Lemonade Stand Foundation

Lisa

White

Rock Against Cancer

Margaret

Norris

The Pablove Foundation

Mark

Mozer

Childhood Cancer Advocate

Maureen

Lilly

Children's Cause for Cancer Advocacy

Meg

Crossett

DC Candlelighters

Monique

Whan

Childhood Cancer Advocate

Nancy

Goodman

Kids v Cancer

Robyn

Raphael

Keaton Raphael Memorial

Ruth

Hoffman

American Childhood Cancer Organization

Sandi

Ring

SuperSibs

Sandy

Barker

Gold Rush Cure

Shirley

Moy

Alex's Lemonade Stand Foundation

Steven

Pessagno

Alex's Lemonade Stand Foundation

Sue

Axelrod

Isaiah Alonso Foundation

Tom

Dunbar

Evan Dunbar Neuroblastoma Foundation

Vickie

Buenger

Childhood Cancer Advocate

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