CAC2 Update–November/December 2013

Greetings CAC2 Members!

With holiday season upon us, it seems very appropriate to reflect on all that the CAC2 community has accomplished over the last year.

  • We have galvanized a community of more than 50 organizations and nearly 20 individuals who are committed to work collaboratively in the fight against childhood cancer and who are wrapping up previously initiated projects.
  • We have finalized most of the necessary filings to establish CAC2 as a legally recognized non-profit organization.
  • We have seated our first Board of Directors.
  • We have launched the CAC2 website and have a working plan in place for members to initiate new projects for use to work on and support together.

We are proud of these accomplishments and many others. Thank you all for making 2013 a success. We would also like to thank our outgoing moderators–Gavin Kerr, Bob Madonna and Joe McDonough–for their vision and leadership over the last several years – we could not have done it without their hard work and dedication!

In October, the community elected our first Board of Directors. This team will continue to work to improve and promote collaboration among our member organizations and for the community as a whole. The chart below provides a full list of board members, their assigned committee responsibility, and term of service.

Board Member E-Mail Address Committee Assignment Term
Vickie Buenger Board President 2 Years
Allison Clarke Communications 1 Year
Joy Cruse Meetings 3 Years
Karla Flook Meetings 1 Year
Trish Kriger Communication 3 Years
Beth-Ann Krimsky Membership 3 Years
Maureen Lilly Finance/Audit 1 Year
Donna Ludwinski Membership 3 Years
Steve Pessango Board Treasurer 2 Years
Tom Pilko Development 2 Years
Bob Piniewski Board Vice President 3 Years
Julie Sutherland Technology/Website 1 Year
Lisa Towry Board Secretary 2 Years

Needless to say, there is much work to be done. Below is a brief update of current activities from various committees and project teams. Many of these work groups are looking for your feedback or ongoing participation. We encourage everyone to take an active role in the community by providing information, insights, and skills where needed. Your feedback and participation opportunities are highlighted in bold below:

Membership Committee

Our current membership includes:

  • 54 organizations
  • 15 individuals
  • 3 students
  • 75+ associate members

Please help us to build our membership ranks by forwarding the attached application along with a personal note of encouragement to organizations or individuals who you think would benefit from membership in CAC2.

Development Committee

The Development Committee has contracted with Jaime L. Howard to assist in identifying and preparing proposals for potential sources of funding to support the operations of CAC2. The committee is finalizing boilerplate information necessary for submission to prospects and will begin sending proposals in December.

As noted in previous discussions/meetings, the committee will NOT pursue sources of funding that conflict with CAC2 member solicitation, but rather will make application to funders who offer grants specifically for capacity building of coalition-based organizations.

If you can help to support grant applications in this targeted approach, please contact Tom Pilko at

Communications Committee

The Communications Committee has been charged with both external and internal communication for CAC2. The committee is currently working to document a full communications strategy and would like your feedback. Please take a few minutes to link to the communications survey to provide your input: CAC2 Communications Survey.

September Study Group

The September Study Group, a work team commissioned by the CAC2 board, will plan and conduct a study of September Childhood Cancer Awareness Month events/activities that took place across the country in 2013. The deliverable will have three elements (description, analysis, and recommendations):

  • The descriptive element of the study is to understand what is currently going on in the community during childhood cancer awareness month and should generally consider
    1. Members’ collaborative activities
    2. Members’ activities
    3. Collaborative activities
    4. Other activities
  • The analytical element of the study should generally make sense of what you observed happening
    1. Identify ways that CAC2 could support our members and the community to magnify, enhance, or fill in the gaps of what is happening already.
  • Recommendations will include up to 3 concrete ideas that we could float to the community that would allow members to develop projects and project teams around for implementation on or before September 1, 2014.

As part of the study and to guarantee that this report is as comprehensive as possible, the September Study Group asks CAC2 members to please send a brief description of any activities undertaken by their organizations during September 2013. Please send these to Steve Crowley

Hope Portal

The CAC2 Online Resource Guide work team and representatives from Children’s Hospital of LA are meeting weekly to develop enhancements to the Hope Portal ( The work team is currently testing the State filter and plans to begin adding additional resources (organizations, agencies, etc.) by March 2014.

During December and January, CAC2 members will receive forms indicating the information needed and a description of the submission process for the Hope Portal. The team is seeking 6 CAC2 volunteers to join the committee to help review the submitted forms. Please contact Jennifer Louis: or Diane Moore: to learn more about the time commitment and tasks involved.

Research Database

CAC2 will soon be partnering with the International Cancer Research Partnership (ICRP) to bring a comprehensive searchable database to its members. A subscription to the ICRP database allows members to use enhanced searches and analytical tools to better understand the landscape of cancer research. The database houses information from over 80 cancer research organizations including the NCI. Stay tuned for updates on how to take advantage of CAC2’s subscription. In the meantime you can visit their website at

Join Us! Advocates Conference Call

Come call-in to share and discuss bills, regulations, and regulatory efforts you are working on to benefit children with cancer, or call-in to hear what others are working on.

December 2, 2013, 12:00 – 1:00 EST

Conference call number: 712-432-0850

Password: 419689#

Notes from the Web

The website has interactive features where visitors (either members or the general public) can seek guidance, information, and feedback that our members can respond to. We have received several e-mails requesting assistance or information from our membership. If you are able to assist, please reach out via the contact information provided.

From: Regina Evans

Our organization has been up and running for a little over a year now. We have “max’d out” on what we can do with our current “starter” website and we are looking for a new website company. The couple leads we had did not meet our needs. Would it be possible to either obtain a current email listor for you forward this request for me asking members for recommendations regarding a webmaster or company who designed and maintains their site?

Thanks for your help. Have a great day!

Regina Evans

Cure4Cam Childhood Cancer Foundation


From: Amy Siodlarz

Subject: Family Resources

Hello CAC2,

Our organization is new and has chosen to focus on family support for those touched by cancer. We are looking to develop a screening tool to best determine what a family may need from us. We envision this to be either a brief paper form or a series of thoughtful questions we could go over with a family in person need be.

In effort to avoid reinventing the wheel, we wonder if you could point us to a fellow organization that may have a template of sorts and would be willing to share their screening process for families.

Thank you very much,

Amy Siodlarz


From: Amelia Pettiss

Subject: Other

I have just been assigned as the Regional Coordinator for South Carolina Chapter for Bear Necessities Pediatric Cancer Foundation out of Chicago, Illinois. I am thrilled to see a collaborative partnership between this group and other non-profits with the same focus and intent. Our Chapter has its main focus on raising funds and awareness for research.

Once I have had a chance to really get my feet wet with this chapter I would like to know what all I can do to be involved with CAC2 to be sure I have a broad base of understanding of your organizations scope and reach.

Thanks! Ame


From: Heidi Helfand

Phone: 805-448-2519

Child’s Diagnosis: Myxopapillary Ependymoma

Child’s Age: 8

We’re a year into this. I’m always looking to hear about treatment information and what other children are going through. After surgery and radiation, it’s like trial and error with chemotherapy. There isn’t a known protocol that is sure to work. So we are constantly searching and wondering what is best for our child.

We recently started a facebook group to try to find other parents. There are now 9 of us together. So I’m looking for more parents. I figure if we all stick together maybe later we can take some action, like pool our kids’ tumor tissue together to make a large sample size for a researcher. The problem with rare cancers is that the tumor tissues are scattered. Maybe the parents need to band together like this to make research happen for this rare cancer.


From: Donna Espada

Subject: Other

I just lose my son, and I am left with some many unanswered questions. He had Neuroblastoma Stage 4 – battled it for 11 months. He was only 4, didn’t have any support from hospital. 718-930-2144


John Robert Murphy

Subject: Membership

Just joining up to help! I am a vocalist and band member of some big tribute bands (Tribute to Journey, Led Zeppelin, and Pink Floyd). Maybe I can help some way with fundraising concert events.

CAC2 Idea Process

If you have a CAC2 project in mind, but don’t know how to get started please, e-mail Vickie ( or Bob Piniewski ( We can help you get your idea into shape, brought to the membership, and navigated through the process.


If you have questions, comments, complaints, or suggestions, please don’t keep them to yourself. Feel free to contact me or any board member.

Happy Holidays! On behalf of the CAC2 Board,


Let’s imagine our future together working for a world without childhood cancers.

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