All posts tagged: Survivorship

CAC2 Member Blog–Celebrating the Introduction of The Comprehensive Cancer Survivorship Act

December 19, 2022
Community News, Guest Blogs No comments yet
By CAC2 Member Jess Kean, Children's Cancer Cause. The Comprehensive Cancer Survivorship Act was introduced in Congress on December 14, 2022. As the only childhood cancer organization involved in the drafting of this legislation, CAC2 Member Children's Cancer Cause is pleased to share the details of this bill with other CAC2 members in the hopes that the community will join us as we work toward its passage. The Comprehensive Cancer Survivorship Act addresses care planning, transition, navigation, reimbursement, quality, and so much more. It aims to address gaps in survivorship care and develop desperately needed standards to improve the overall [...] Read more

CAC2 Webinar–Not For Profit Financial Matters

December 17, 2022
CAC2 News, Webinars No comments yet
Managing the financial aspects of a non-profit organization can be complicated and at times confusing. In this webinar, Not-For-Profit Financial Matters, presenter Lisa Meacham (Partner, Plante Moran) provides an engaging and educational webinar that discusses: The components of not-for-profit organization finances Understanding what an audit is all about IRS Form 990 Other financial tools Lisa Meacham Lisa Meacham advises not-for-profits on accounting and regulatory changes, provides relevant industry data and benchmarking information, and helps them use financial information to tell their story to stakeholders. Her clients include foundations, educational institutions, health and welfare organizations, arts organizations, professional associations, and government [...] Read more

CAC2 Webinar–Hearing Loss from Cisplatin—Multiple Perspectives on the New FDA Preventative Treatment Option

December 1, 2022
CAC2 News, Webinars No comments yet
Children who receive cisplatin as part of their cancer treatment are at risk for progressive and/or permanent hearing loss as a result of their treatment.  This treatment effect can influence speech and language development, educational achievement, and social-emotional development.  Recently, the FDA approved Pedmark, a Sodium Thiosulfate Injection created by Fennec Pharmaceuticals, as a treatment to help reduce the risk of ototoxicity associated with cisplatin.  November’s CAC2 All-Member webinar provided key information about this important breakthrough in improving the quality of life for childhood cancer survivors who received cisplatin. Attendees learned about the importance of this specific drug approval, the [...] Read more

Survivorship Matters Blog: Pedmark – Improving Quality of Life for Childhood Cancer Survivors Preventing Chemo-Induced Hearing Loss

November 28, 2022
Blog Posts, Survivorship Matters Blog No comments yet

Survivorship Matters Blog By CAC2 Individual Member Mary Beth Collins “Your child has to be alive to experience side effects” It is heard by every parent of a child with a high-risk pediatric cancer when reviewing treatment protocol: your child must endure and survive all of the therapies first, before a parent can afford to be concerned about side effects.  It’s a pragmatic priority; the focus is on keeping your child alive and achieving No Evidence of Disease, or ”NED” as commonly referenced.  With the most challenging cancers, it is spoken with earnest and delicate honesty. Today, according to the […]

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Survivorship Matters Blog: Recapturing the Dream

June 29, 2022
Blog Posts, Survivorship Matters Blog No comments yet

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

February 17, 2022
CAC2 News, Webinars No comments yet
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

December 13, 2021
Webinars No comments yet
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

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 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 Member Blog–Better Together

December 1, 2020
Blog Posts, Member Blogs 1 comment
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
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