All posts by CAC2

CAC2 Special Community Webinar–Vincristine Drug Shortage Update

October 24, 2019
Community News, Webinars No comments yet
Dr. Peter Adamson, Chair of the Children's Oncology Group (COG), shared information that COG has received along with a perspective on childhood cancer drug shortages, including the current situation with vincristine.  We were pleased to join with the Alliance for Childhood Cancer to invite members of the two coalitions and the wider community this Community webinar.  We offered this webinar so that the community could have a better understanding of the shortage, how to work with care providers, how to contact the FDA when problems arise from the shortage, and advocacy steps being taken. PUT_CHARACTERS_HERE Read more

CAC2 Webinar–Collaboration and Progress: How Target Pediatric AML Facilitated LLS PedAL, a Global Master Trial in Acute Leukemia

October 2, 2019
Webinars No comments yet
In our October All-Member Webinar, TpAML co-founder/advocate Julie Guillot and Dr. Gwen Nichols, Chief Medical Officer, Leukemia & Lymphoma Society, highlighted the energy and work behind putting -- and keeping -- the patient at the center of drug development. Participants had the opportunity to learn valuable insights on the makings of Target Pediatric AML (that a number of CAC2 members worked together on) and how research findings have spurred the launch of a groundbreaking global master clinical trial initiative in high-risk childhood leukemia, LLS PedAL. Read more

CAC2 Member Blog–Childhood Cancer Data Initiative Symposium Overview

August 20, 2019
Blog Posts, Member Blogs No comments yet
#ccdirocks trended on Twitter as participants at the Childhood Cancer Data Initiative Symposium shared the rocks they selected from among those painted by volunteers from the Dragon Master Foundation. “The rocks brought the children to the meeting, which was so important” –Warren Kibbe By CAC2 Member Caitlin Barrett, CureSearch for Childhood Cancer During the 2019 State of the Union Address, President Donald J. Trump raised the possibility of committing $500M over ten years to pediatric cancer research. The National Cancer Institute (NCI) is developing a plan to use this potential budget infusion to assist in the collection, distribution, and use of [...] Read more

Gratitude and Challenge Co-Exist In Childhood Cancer Survivorship

June 28, 2019
Survivorship Matters Blog No comments yet
Survivorship Matters Blog By CAC2 Member Mary Beth Collins   The day that a child completes treatment brings a special kind of glory. Some hospitals even have huge bells to ring to signify the occasion. Regardless of the symbolic gesture, a parent’s spirit hears trumpets sound, now beaming where darkness and fear were ominous for months or sometimes years. One’s life immediately transitions at such times, divorcing from the days of treatment highs and lows, fears of pending death, and the mosaic of so many emotions when parents yearn for children to be healthy enough to complete treatment. It is winning [...] Read more

Childhood Cancer and Bullying – It’s More Common, and Has Greater Impact, Than You Think

June 3, 2019
Survivorship Matters Blog No comments yet
Survivorship Matters Blog By CAC2 Member Mary Beth Collins My introduction to childhood cancer and bullying was in 1999 on a neuroblastoma listserve with ACOR (American Cancer Online Resources), the way parents and specialists congregated together before the explosion of social media channels like Facebook, Twitter, or Instagram. My son had only been in treatment a few months, and a parent was sharing an incident that happened on the playground. Her son had been looking forward to getting well enough to return to school, and his fellow classmates decided at recess to taunt him by pretending to be afraid of [...] Read more

The Academic Impact of Childhood Cancer Treatment Side Effects

April 2, 2019
Survivorship Matters Blog No comments yet

Survivorship Matters Blog By CAC2 Member Mary Beth Collins “Your child has to be alive to experience side effects.”  It’s a statement commonly heard by parents reviewing treatment protocol for a child newly diagnosed with a pediatric cancer.  At that moment, one is only focused on desperately keeping a child alive and achieving No Evidence of Disease, or ”NED” as is commonly referenced. At that time, it’s almost impossible to consider quality of life factors when parents are terrified that without treatment they will lose their child.  According to the Coalition Against Childhood Cancer (CAC2) Fact Library, more than 95% […]

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What Is Survivorship?

February 14, 2019
Survivorship Matters Blog No comments yet

What is survivorship?  For anyone touched by childhood cancer, the word is intimate, emotional, and somewhat complicated. Whether you are a child in treatment or beyond, parent, friend, practitioner, or researcher, the word is familiar, personal, and identifying. For each person, the word represents something unique. Is it just a label? Is it elusive? Is it a dream never realized? Is it a charge? Is it determinant? A proclamation? A destination? A victory? A curse?  An honor? Survivorship in its entirety embodies all of this.   All versions are worth exploring, if we are going to really embrace what survivorship means […]

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Why Gene Therapy is No Longer a Pipe Dream

July 9, 2018
Research Explained No comments yet
CAC2 Research Explained CAC2 members and guests who are also professionals in the field of childhood cancer research find and curate important work and provide pointers and explanations for our general membership. CAC2 Member Laurie Orloski, PharmD, found and curated the article in the link below: https://psmag.com/social-justice/gene-therapy-no-longer-pipe-dream It is well appreciated that cancer is a disease of the human genome, arising from alterations in DNA. In 2017, the US FDA granted its very first regulatory approval of a gene therapy, specifically for the treatment of pediatric and young adult B-cell acute lymphoblastic leukemia: anti-CD19 chimeric antigen receptor (CAR) T-cell immunotherapy [...] Read more

Oncohistones

May 4, 2018
Research Explained No comments yet
CAC2 Research Explained CAC2 members who are also professionals in the field of cancer research find and curate important work and provide pointers and explanations for our general membership. Raquel Sitcheran, PhD found and curated the three articles cited below. One of the most remarkable findings in childhood cancer research in recent years has been the discovery that defects or mutations in genes that encode histones are directly linked to tumor growth. Histones are proteins that bind DNA and control how DNA wraps and coils itself to form more condensed chromosomes (see Figure). They not only provide structural support for [...] Read more

An Individualized Approach Requires Collaborative Efforts

November 27, 2016
Blog Posts, CAC2 News, Member Blogs No comments yet
By Vickie Buenger, President of Coalition Against Childhood Cancer The Coalition Against Childhood Cancer (CAC2) held its first pediatric cancer research conference entitled From Bench to Bedside and Beyond to connect childhood cancer advocates, research funders, clinicians, and scientists from academia and industry. A number of common themes emerged from the various investigators’ presentations. Clearly, most childhood cancers are different than adult cancers, and the relatively small numbers of patients present problems for researchers, sponsors, and others responsible for designing clinical trials. We must remember that these small clusters of patients represent our children. Presenters also agreed that despite progress [...] Read more
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