All posts tagged: Survivorship

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

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

Survivorship Matters Blog: Recapturing the Dream

Survivorship Matters Blog By CAC2 Member Mary Beth Collins, PREP4Gold During his teens, my neuroblastoma survivor Joshua was struggling in every way a person could struggle. Puberty had brought on new long term side effects, and reinvigorated old ones that we thought were behind us. His chemo-induced hearing loss progressed from moderate-to-severe to profound, and his hearing aides became a trigger for his migraines. The combinations of cognitive impact, cluster migraines, and chemo-induced ADHD made education almost impossible. He was doing the best he could on home/hospital care with a teacher who visited the house a few times a week. […]

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CAC2 Webinar–Better Together: Survivorship Connection

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 Webinar–Multimorbidity from Surviving Childhood Cancer: Using Data to Improve Shared Decision-Making

In our December CAC2 All-Member webinar, Mariah Forster Olson (Neuroblastoma Children's Cancer Society) represented the CAC2 Survivorship Interest Group and hosted Nickhill Bhakta, MD, MPH. Dr. Bhakta.  Dr. Bhakta discussed why the academic approach of thinking about one childhood cancer with one treatment exposure with one chronic condition is not a realistic way of solving long-term disease burden experienced by survivors.  He discussed his work and efforts to engage survivorship groups to guide relevant and meaningful improvements in decision-making between all stakeholders involved in the healthcare of the survivor. Read more

CAC2 Survivorship Matters Blog: Surviving Scanxiety in Childhood Cancer Survivorship

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

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

CC Community News Digest (March 29-April 11)

Assorted news from the last week: From the American Cancer Society:  Prevalence and predictors of cancer‐related worry and associations with health behaviors in adult survivors of childhood cancer From Children’s Cause:  Rachel McCallum is a long-term survivor diagnosed with Anaplastic Astrocytoma of the 4th ventricle of the brain stem in 1993.  Her experience as a long-term survivor has encouraged her to become an advocate for others like herself who have struggled with the transition from pediatric patient to independent adulthood. Research from St. Jude suggests that the socioeconomics of families is a significant predictor of whether childhood brain tumor survivors […]

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CC Community News Digest (December 21-January 3)

Assorted news from the last two weeks: NCI unveiled two new resources for young people with cancer: tips to help young people facing end-of-life decisions talk with their doctors and make choices about palliative care, advance directives, living wills, and how they want to be remembered. resource to help young people find support after a cancer diagnosis and during cancer treatment. It includes advice on talking with mental health experts, spotting signs of depression, and finding support groups. Study suggests “that children in the U.S. may be treated more intensely compared to children in the U.K., which led to a decreased […]

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CAC2 Member Blog–Better Together

By CAC2 Member Carolyn Breinich In 2019, I attended my first CAC2 Summit in Columbus, Ohio.  It was there where Mariah, a 40-year survivor, and I, a 26-year survivor, met, connected, and formed a special friendship. We quickly realized that even though we did not have the same form of childhood cancer and even though we were diagnosed at two very different ages, we had so much in common and we understood how each other felt as long-term childhood cancer survivors. We both agreed that it was wonderful to have someone to talk to, since connections and resources had been limited or non-existent for [...] Read more

CC Community News Digest (November 9-15)

Assorted news from the last week: CAC2 Member Joe Baber urges community members to take immediate action to secure Senate passage of the Creating Hope Reauthorization Act, in this guest blog post.  “Because of the incentives in this bill, for the first time, we now have several kids’ cancer drugs in development,” Joe writes. “We cannot allow this bill to die on the Senate floor! The House passed a version of this bill on September 30, but so far, only two of our 100 Senators have cosponsored the Senate version. It will die if it doesn’t pass by December 11.” […]

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