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CAC2 Childhood Cancer Community News Digest (August 29-September 11)

September 12, 2022
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Assorted News from the Last Two Weeks: National Cancer Institute’s CCDI Molecular Characterization Initiative adds rare tumors. Study provides first in-depth look at major mix-ups in the genomic terrain of pediatric high-grade gliomas. LLS is working to change the pediatric clinical trial model. The aftermath of childhood cancer:  2000 days without Ana Biden appoints former government scientist as first leader of ARPA-H. The use of tisagenlecleucel (Kymriah) in children younger than 3 years of age with relapsed or refractory B-cell acute lymphoblastic leukemia (ALL) was as effective, and safe, in a retrospective cohort study as it was previously seen to […]

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CAC2 Webinar–Why Foundations Should Collaborate to Fund Research and How the Foundation Match Platform Can Help

July 22, 2022
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As Foundation Match makes its debut, this webinar gave an opportunity to learn more about the platform. In addition, a moderated discussion explored a few of the different motives and approaches that CAC2 member organizations that co-fund research adopted and learned from an investigator about how funding collaboration has the potential to improve the research landscape. Panelists shared why they are excited to join the Foundation Match platform. Panel members include: Donna Ludwinski (Solving Kids’ Cancer) Lisa Ward (Tough2gether Against DIPG/DMG) Julie Guillot (Leukemia & Lymphoma Society Volunteer) Elias Sayour, MD, PhD (Associate Professor of Neurosurgery and Pediatrics, Principal Investigator, [...] Read more

CAC2 News–Great.com Interviews Coalition Against Childhood Cancer About A Future Without Childhood Cancers

May 2, 2022
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Danielle Riberio from Great.com interviewed Coalition Against Childhood Cancer as part of their ‘Great.com Talks With…’ podcast. This series is an antidote to negative news stories that aims to shed light on organizations and experts whose work is making a positive impact on the world. Families affected by childhood cancer face untold challenges. From having to sacrifice work to paying huge medical bills, only a small number of families can afford to make these sacrifices. For the vast majority that cannot, life can be extremely difficult for both patient and family members. In this episode, Danielle talked with Vickie Buenger, […]

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CAC2 Webinar–Better Together: Survivorship Connection

February 17, 2022
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In our February CAC2 All-Member webinar CAC2 invited the Survivorship Interest Group's Better Together committee to discuss their Project Incubator initiative.  Led by Mariah Forster Olson, and joined by committee members, Nick Giallourakis and Carolyn Breinich, this project would enable survivors and their parents, caregivers, and other family members, as well as nonprofit organizations and healthcare professionals, to be connected with available resources, programs, and services to assist in the lifelong journey of childhood cancer survivorship. This will be accomplished using our Better Together spreadsheet, as well as a unique, personalized approach. Read more

CAC2 News–Ethics Think Tank White Paper Accepted at SIOP 2021

October 18, 2021
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Access to the most promising pediatric cancer treatments is often achieved by participating in clinical trials. And private, nonprofit organizations have become a significant source of funding for these trials that are often left behind by industry. Drug development for pediatric cancer has expanded in recent years because nonprofits are stepping up. But federal reporting standards do not apply to nonprofits leaving them to try their best and hope for the best. This lack of formal oversight raised questions for a number of CAC2 members about the ethical, legal, and social commitments between non-profit funders and the patient communities they [...] Read more

Primer on State Cancer Action Plans Training Meeting

May 14, 2021
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State-level advocacy is becoming a big opportunity across the country as it gives advocates another way to get involved in addition to going to DC.  This has been more and more apparent over the last year as people haven't felt comfortable traveling as much. The Coalition Against Childhood Cancer (CAC2) and the American Childhood Cancer Organization (ACCO) co-hosted an online advocacy training meeting focused on State Cancer Action Plans on May 11.  Such plans, mandated by the Center for Disease Control (CDC), articulate the challenges and issues posed by cancer in each state and often include goals, objectives, and strategies [...] Read more

Primer on State Cancer Action Plans Training Meeting

April 28, 2021
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The Coalition Against Childhood Cancer (CAC2) and the American Childhood Cancer Organization (ACCO) are pleased to invite you to a jointly convened online advocacy training meeting focused on State Cancer Action Plans.  Such plans, mandated by the Center for Disease Control (CDC), articulate the challenges and issues posed by cancer in each state and often include goals, objectives, and strategies to help inform and guide communities in the fight against cancer. Primer on State Cancer Action Plans Click above to register (Zoom details to follow) Tuesday, May 11, 2021 7:00-8:30 pm ET 6:00 CT, 5:00 MT, 4:00PT Currently, only 21 [...] Read more

Registration Open: CAC2 2021 Annual Summit

April 23, 2021
CAC2 News 1 comment

Registration is now open for CAC2’s 2021 Annual Summit, taking place virtually Thursday, June 24th and Friday, June 25th.  This year we will meet two consecutive afternoons on Zoom.  The CAC2 Meetings Team has designed a robust program that will balance expert content presentations with opportunities for active engagement for attendees. We will kick off the first day at noon ET with a session welcoming New Members and giving them the chance to “meet & greet” each other and learn how to engage the many resources and opportunities available to CAC2 members.  The afternoon will also include the members-only Business […]

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Presenting Mandy Spielvogle Powell, CAC2 Managing Director

April 6, 2021
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By CAC2 President Vickie Buenger At our January 2020 board retreat in Philadelphia, the CAC2 Board of Directors began what will ultimately be an 18-month leadership transition, carefully designed to ensure long-term sustainability of the organization. In March 2020, we presented our draft succession roadmap to all of you during the All-Member Webinar, and we have made every effort to keep you apprised of this process over the past year. We are now at the 14-month mark of this succession work and have exciting news to share:  We have selected and hired CAC2’s first Managing Director! This thorough, thoughtful process was executed by […]

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CAC2 2020 Annual Summit

July 16, 2020
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Over 100 CAC2 members and guests gathered for a special online event on Friday, July 17, 2020 to attend our 8th Annual Summit Speaker Program and Annual Members' Business Meeting.   Our volunteer Meetings Team designed a carefully curated two-hour version of our traditional Annual Summit accessible to all. Dr. Doug Hawkins, newly elected Chair of the Children’s Oncology Group, speaking on his vision for COG, with Q&A on how parent patient advocates fit into that vision and The RACE Act on the Eve of Implementation Panel, a conversation moderated by Dr. Stacey Adam (FNIH) featuring Dr. Malcolm Smith (NCI), Dr. Martha Donoghue (FDA), [...] Read more
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