CCCA's First Webinar of 2018 Highlights Online Resources
Our 2018 Webinar Series kicked off with an hour-long tour through the maze of support services and resources available to families of kids with cancer and survivors. "Navigating the Childhood Cancer Journey" delved into some of the best tools available to aid in a child's journey, from diagnosis to survivorship.
Our experts discussed a wide range of support tools, including:
Nancy -- Things that influence a child's journey: age of the child, diagnosis, type of protocol & family stages. "Someone who is 2 [years old] needs very different support than someone who is 14."— Children's Cause (@childrenscause) January 31, 2018
- The Patient Advocate Foundation, which offers debt crisis assistance, insurance enrollment assistance & insurance navigation assistance -- all free of charge to patients & families.
- Social workers and childhood cancer camps, like Camp Sunshine at Sebago Lake in Casco, Maine. Camp Sunshine's Psychosocial Director Nancy Cincotta discussed the impact of a childhood cancer diagnosis on the whole family, from parents and grandparents to siblings, and the important role that social workers play in helping families navigate the hospital system and overcome their unique challenges and situations.
- Hope Portal, a new database of childhood cancer resources designed to help families quickly and easily find the childhood cancer support services that best match their family's particular needs.
A recurring theme in the webinar was the importance of finding the right support early on in a family's journey, to maximize the effectiveness of available support and minimize a family's hardships:
We especially encourage families to take a moment to explore the new Hope Portal, a centralized source of pediatric and young adult cancer resources brought to the community by the Coalition Against Childhood Cancer. Hope Portal lets users customize their search to find reliable childhood cancer-related assistance quickly and easily. Visitors to the Hope Portal can search the database by specifying diagnosis, geographic location and the type of assistance needed (i.e. scholarships, transportation assistance or cancer camps).
Joey McMahon of KBI Biopharma, Hope Portal's technical lead, urges families to reach out with their feedback after trying out Hope Portal, as the tool remains in a soft launch phase of development and is still being refined.
The full recording of this January 31st webinar is available below.
Our next webinar - "Advocacy Tools and Tactics: How to be the Voice of Change" - will be offered exclusively to members of our Kids Action Network. Grab your free membership today!