“ReConnected” authors launch YouTube Channel to raise awareness and share stories of rare disease survivorship
— Categories: Posted on March 16, 2023
Ependymoma spinal cord tumor survivors are using video interviews to raise awareness and provide connection for a rare disease community.
Ependymoma survivor Dawn Standera is raising awareness for spinal cord tumor survivors through writing and now venturing into the virtual world through video interviews with other spinal cord tumor survivors on a new YouTube channel. Dawn is the author of two books, “ReWired: A Story of Recovery from Spinal Cord Tumor Surgery” and co-author of “ReConnected: Stories from Spinal Cord Tumor Survivors.” Both books offer much-needed insights into the realities of surviving and navigating life after a spinal cord tumor diagnosis.
Reconnection is a powerful concept for those with a spinal cord tumor (SCT) diagnosis. After surgery, patients strive for a reconnection between the central nervous system and their bodies. Her new book addresses an equally important type of reconnection: to other survivors. “ReConnected: Stories of Spinal Cord Tumor Survivors” is a collection of real-life stories in their own words from nine people who came through SCT diagnosis, surgery, and treatment and one health care worker to reconnect with themselves and others.
“After the book came out, readers reached out to me, looking for more information about surgical outcomes or curious about what my life was like during the six years after surgery.” Dawn shared. “I realized that the people I was meeting also had their own stories to tell.”
The authors of “ReConnected” are looking to the CERN Foundation, a program of the National Brain Tumor Society, to collaborate in order to raise awareness about the disease and make these video interviews available to more people.
Dawn explains why turning to video interviews was important: “I decided that an interview format would be an interesting vehicle for people to share their stories. The interview format allows both authors in ‘ReConnected’ and those who did not write but are willing to be interviewed to participate in sharing their stories. I think it is also valuable to visually see people who have survived surgery.”
In addition, some people have sensory and motor deficits after surgery that prevent them from turning pages. This audio-visual format makes the content accessible to people of all abilities. Dawn shares, “I know that when I was first diagnosed, I was desperate for stories from patients. I am hopeful this helps to inform, connect and support anyone affected by a spinal cord tumor diagnosis.”
Kim Wallgren, Executive Director of the CERN Foundation, has been working in collaboration with Dawn for years to elevate the voices of this rare disease community. Wallgren shares, “Dawn has been an extremely important partner in helping to not only raise awareness for ependymoma but also helping people to find Personalized Support and Navigation that CERN offers for all ependymoma community members. These stories matter and can inspire readers to take action in a variety of different ways.”
You can subscribe to the ReConnected - Spinal Cord Tumor Stories YouTube channel and the Ependymoma Community Videos Playlist on the CERN Foundation YouTube channel.