Currently browsing: Blog Posts

Guest Blog–National Cancer Institute Launches the CCDI Childhood Cancer Data Catalog

May 5, 2022
Blog Posts, Community News No comments yet
The Childhood Cancer Data Catalog is a searchable database of National Cancer Institute and other pediatric cancer resources and is part of NCI’s Childhood Cancer Data Initiative (CCDI), which is building a community centered around childhood cancer care and research data.  Through enhanced data sharing, investigators can improve understanding of cancer biology, preventive measures, treatment, quality of life, and survivorship, as well as ensure that researchers learn from every child with cancer. Recently, CCDI launched the CCDI Data Catalog web application, part of the CCDI Data Ecosystem.  The CCDI Childhood Cancer Data Catalog is an inventory of pediatric oncology data resources, [...] Read more

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

May 2, 2022
Blog Posts, CAC2 News No comments yet

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, […]

Read more

Community News–Congress Introduces the Childhood Cancer STAR Reauthorization Act

May 1, 2022
Blog Posts, Community News No comments yet

During last week’s Childhood Cancer Action Day, legislation to reauthorize the Childhood Cancer STAR Act was introduced in both chambers of Congress! The original STAR Act was signed into law in 2018 after unprecedented support from our community.  It authorized five years of funding at $30 million annually from 2019-2023.  Also, thanks to the community’s efforts the STAR Act has subsequently received those expected appropriations of $30 million each year.  The STAR Act represents important bipartisan legislation designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors. On April […]

Read more

Community News–Childhood Cancer Advocates Support Successful 2022 Action Day!

April 29, 2022
Blog Posts, Community News No comments yet

The Alliance for Childhood Cancer sends its thanks for a fantastic Action Day on April 28!  Nearly 300 advocates from 39 states and Washington, DC participated and attended almost 200 meetings sharing their stories and asking for congressional support for important legislation and funding for childhood cancer.  CAC2 members, Alliance members, and many others across the country had their voices heard. This year’s top line asks: We urge Congress to provide significant funding increases for the National Institutes of Health (NIH) and National Cancer Institute (NCI) and to fully support childhood cancer programs, including providing $30 million to fully fund […]

Read more

Guest Blog–National Cancer Institute Launches Molecular Characterization Initiative for Childhood Cancer Research

March 23, 2022
Blog Posts, Community News, Explainer Post, Guest Blogs No comments yet

The National Cancer Institute’s new Molecular Characterization Initiative (MCI) fosters data sharing in childhood cancer research. The program currently offers comprehensive molecular characterization of tumors to children, adolescents, and young adults (AYAs) with newly diagnosed central nervous system tumors receiving care at hospitals affiliated with the Children’s Oncology Group. The DNA and RNA in participants’ tumors are analyzed through this voluntary, free program.    Participants’ tumor and blood samples are analyzed in an accredited lab, with results shared with families and doctors within 21 days. This detailed information about the cancer can be used to make a more precise diagnosis, […]

Read more

Member Blog–If No One Knows, No One Cares: An Urgent Message for President Biden

February 28, 2022
Blog Posts, Community News, Member Blogs No comments yet

By CAC2 Member Janet Demeter, Jack’s Angels “This is the wake up call of #Moonshot4Kids: medical research investment into cures for children is one area where our priorities as Americans are completely upside-down.”–Janet Demeter This is the story of Moonshot4Kids meets the White House Moonshot! I visited the White House on Feb. 2, 2022 to witness President Biden’s announcement to reignite the Cancer Moonshot.  I never expected an invitation to this event.  At the end of last year, I had been involved in a White House OSTP roundtable of stakeholders in the childhood cancer community at the end of last […]

Read more

Survivorship Matters Blog: Surviving Scanxiety in Childhood Cancer Survivorship

November 1, 2021
Blog Posts, Survivorship Matters Blog No comments yet
Survivorship Matters Blog By CAC2 Member Mary Beth Collins, PREP4Gold SCANXIETY –  just the word generates response in the childhood cancer community. One might tense up, suck in some air, get nauseous, or experience a tightening of the chest. There is no minimizing the concern that families endure before the scanning process and receiving the results that confirm the potential of cancer in your child’s body. It is a very sensitive, stress-inducing part of the childhood cancer journey. What is Scanxiety? Scanxiety – or scan anxiety – is a relatively new term. We didn’t have such a reference when my [...] Read more

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

October 18, 2021
Blog Posts, CAC2 News No comments yet
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

CAC2 Member Blog–Taking Childhood Cancer Advocacy on the Road: Childhood Cancer License Plates

October 1, 2021
Blog Posts, Member Blogs, Survivorship Matters Blog No comments yet
By CAC2 Member Mary Beth Collins, PREP4Gold For the entire month of September the world hears a great deal from the childhood cancer community, feverishly raising awareness, advocating for programs & funding, and sharing stories about treatment, survivorship, and bereavement. Social media posts are in abundance, medical experts and advocates are interviewed, and researchers publish papers with the latest data. Each day of the month, there is a great deal provided about childhood cancer as Childhood Cancer Awareness Month (CCAM) continues to strengthen in message and resolve. Come October 1st, some wonder what can be done to sustain some of [...] Read more

CAC2 Collaborative Achievement–Foundations Moving Towards A Venture Philanthropy Model

August 13, 2021
Collaborative Achievements, Community News, Explainer Post No comments yet

This collaborative research effort was due in part to childhood cancer groups coming together as part of CAC2. CAC2 salutes CAC2 Member Organizations The Andrew McDonough B+ Foundation, Jeff Gordon Children’s Foundation, The Children’s Cancer Research Fund, along with other community partners who have joined forces with CAC2 Supporting Organization Oncoheroes Biosciences in a unique effort against childhood cancer.  These foundations choose to invest in drug development to get promising drugs across the developmental “valley of death.” The drug development process consists of a long and arduous series of steps to bring a new pharmaceutical drug to the market. The valley of death is […]

Read more
Archives

Enquire now

Give us a call or fill in the form below and we will contact you. We endeavor to answer all inquiries within 24 hours on business days.