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CAC2 Webinar–Make Your Voice Heard Alliance for Childhood Cancer Action Days 2023
We learned more about the Alliance for Childhood Cancer Action Days, which is returning to Washington, D.C., this year for the first time since 2019. Action Days allows you to speak with your members of Congress and their staff to advocate for important childhood cancer issues before Congress. Sharing your story will ensure the voice of kids with cancer is heard loud and clear on Capitol Hill. Click here for more information about Action Days April 24-25, 2023. Make Your Voice Heard PowerPoint Sarah Milberg Sarah Milberg is the Director of Government Relations and Advocacy for the St. Baldrick's Foundation, [...] Read more
CAC2 Webinar–Pediatric Cancer Advocacy – From Your Own Backyard
Many think of advocacy as traveling to Washington DC and speaking to their Senators and members of Congress, convincing them to pass legislation like the STAR Act. While this is an essential part of advocacy, there are many things that you can do within your state that do not involve travel or engaging politicians. Ann Ramer presented opportunities for connecting with your local Childhood Cancer Community and highlighted the available tools on the CAC2 member page to support your effort. Ann Ramer, MPH Ann is a mother of four children, two of whom developed multiple forms of cancer. She is [...] Read more
CAC2 Webinar–Not For Profit Financial Matters: A Deep Dive into the 990
January's CAC2 All-Member webinar provided an opportunity to clear up some of the confusion the IRS Form 990 can cause for many non-profit organizations. In the first half of this webinar, participants learned key information to complete the 990. The second half of the webinar answered questions from participants. Amy Altholz Amy Altholz is the Partner-In-Charge of RubinBrown’s Not-For-Profit Services Group. She is also a Partner in the Assurance Services Group. Her experience with a variety of not-for-profit clients provides her valuable insight into the industry’s best practices. While working for RubinBrown, Amy participated in the Baker Tilly International Exchange [...] Read more
CAC2 Member Blog–Celebrating the Introduction of The Comprehensive Cancer Survivorship Act
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
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
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
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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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
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