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 the majority of our lives. We grew up as survivors fending for ourselves, so having someone to connect with was fairly new and incredible for both of us!
Better Together was started on the foundation that we are “Better Together,” and we want to make sure that other survivors have access to organizations that offer current programs, resources, and support. We both agreed that we do not want current survivors to go through what we did and experience loneliness, isolation, and a lack of resources. On behalf of the Coalition Against Childhood Cancer’s Survivorship Interest Group, I am proud to present Better Together, a program that was first introduced at the Family Support and Survivorship Summer Series in August 2020. This team is led by Mariah Forster Olson, and it also consists of myself, Nick Giallourakis, and Stan Robbins. Better Together is a multi-phase program designed to assist all childhood cancer survivors, their caregivers, and organizations that are assisting this population, regardless of age or stage of survivorship.
- Phase one concentrates on building a database of organizations that offer survivorship resources, services and programs for childhood cancer survivors and their caregivers. We are currently creating this database, researching and gathering relevant data from organizations and resources, and inputting them and their information into the database. The ultimate purpose is to create a “one-stop shop” for childhood and adolescent cancer survivors and their caregivers, and to eliminate the endless hours spent searching the internet for resources.
- Phase two focuses on reaching out to the organizations included in the database. We will learn more about these organizations, specifically about the resources, programs, and services that they offer survivors and caregivers. Additionally, our purpose is to increase the number of survivorship organizations on the Hope Portal, and gain new CAC2 members that focus on survivorship. Ultimately, we want the Hope Portal to become a household name and a name that is synonymous with childhood cancer families and survivors. Finally, we also want to start creating connections for our “navigator” program in phase four.
- Phase three involves partnering with two nonprofit organizations, Imerman Angels and Momcology, to develop peer support programs specifically for childhood and adolescent cancer survivors and their caregivers. This support will use existing programs that both organizations currently utilize, so our primary responsibilities would be marketing and recruiting. We want to ensure that childhood and adolescent cancer survivors and their caregivers have access to peer support. The ability to talk with someone who has been in your shoes or experienced something similar can make coping with childhood and adolescent cancer survivorship and its late effects a little easier. Strategic empathy is a game changer for many individuals in this struggle!
- Phase four includes creating and building a “navigator” program, using the database from phase one, to guide childhood and adolescent cancer survivors, their caregivers, and nonprofits that are assisting this population to organizations that offer survivorship resources, programs, and services. The navigator works a search tool where a person would submit a question or ask for information about any survivorship concern, i.e. camps or outdoor adventures for survivors and their families; organizations that assist with various educational needs or challenges; or college scholarships for survivors. Within a defined period of time, the trained navigator would search our database to find organizations that offer resources, programs, and/or services addressing the person’s specific need or concern. This would enable childhood and adolescent cancer survivors, their caregivers, and nonprofits assisting this population to realize that there are resources available to assist them in their lifelong journey of childhood and adolescent cancer survivorship.
**Please note: Currently, we are able to work on phases one and two. Phases three and four will need to go through the Project Incubator for approval before moving forward.
Surviving childhood or adolescent cancer is hard, but navigating life afterwards can be just as difficult. We want to make sure that childhood and adolescent cancer survivors and their caregivers do not feel alone, and that they have access to the resources they need. Ultimately, we want this population to not just survive, but thrive! We can do this through connecting and collaborating with other organizations that provide relevant resources, programs, and services. When we work together, we CAN change the future for childhood and adolescent cancer
survivors and their caregivers.
The Better Together team would welcome comments or suggestions about Better Together, and we would also welcome any volunteers that would like to work on this project and join the team. Also, we are currently working on phase one, which involves creating the database of organizations that offer various survivorship programs, resources, and services. Many of these organizations exist, so please contact us with any that you are aware of or that have helped you so that we can add them to our database. We want to include national organizations, but our goal is to also include at least two organizations from every state. You can contact the Better Together team or the Survivorship Interest Group via email at: .
- CAC2 Childhood Cancer Community News Digest (September 19-25)
- CAC2 Childhood Cancer Community News Digest (September 12-18)
- CAC2 Childhood Cancer Community News Digest (August 29-September 11)
- Guest Blog–National Cancer Institute’s CCDI Molecular Characterization Initiative Adds Rare Tumors
- CAC2 Childhood Cancer Community News Digest (15-28)