This portion of the website is dedicated to patients and caregivers by allowing them to share their ependymoma stories.
This organization would never have been formed if it weren’t for amazing people like you. It is imperative to share information, as this is a core value of our foundation. Please, take time to read about some remarkable lives and if you feel comfortable, submit some insight into your own personal journey.
Jeff experienced side effects from an ependymoma in his spine and wants others to know how important it is to self-advocate to receive the best care.
Amy shares how her ependymoma tumor was removed from her spine and that led her to pay it forward.
Learn how a patient with an ependymoma in her spine has survived the disease for over 30 years. She shares her treatment experiences and coping tips.
Steven shares how he continues to perservere after having an ependymoma in his spinal cord.
Shannon continues to overcome limitations every day from her anaplastic ependymoma.
After Sofia slipped on the wet tile floor, doctors discovered a tumor located in her tailbone.
Prashant was misdiagnosed for months until an MRI revealed an ependymoma tumor in his spine.
Sarah discovered an ependymoma tumor blocking her spinal canal after two unmedicated C-sections.
Dawn shares what it's like recovering from surgery while giving those who are on a similar journey the reassurance that they are not alone.
Michelle's neurosurgeon discovered multiple tumors along her spine, but through it all she remains positive.
After falling on a playground at school, Sophia cried for days in pain. Doctors later discovered a tumor in her spine.
With the lack of funding and more research needed for myxopapillary ependymoma, a mother decides awareness for this rare cancer.
While Vickie was stepping out of the shower, she slipped and fell on her tailbone, causing excruciating pain. An MRI revealed a spinal ependymoma.
Eileen’s son pulled on her hair to catch his fall causing a huge shock up her spine. This led her to the ER where doctors found an intramedullary ependymoma.
After being married for eight months and trying for her first baby, Chelsea began having horrible back pains. An MRI revealed a tumor in her spine, an intramedullary ependymoma.
After being diagnosed with myxopapillary ependymoma, Anne Moriarty struggled to get pregnant. Her outlook on life has been forever changed.
Mandy, Morissa’s mom, went to numerous doctors to finally find out that her daughter was diagnosed with a spinal myxopapillary ependymoma.
Coach Casey was diagnosed with spinal ependymoma and lives by the motto, “If it is to be, it is up to me.”
After excruciating neck pain, Tony’s MRI revealed an intramedullary ependymoma. After being diagnosed and rehabilitation, Tony had to adjust to his new body.
Sarah’s blog, documents her journey with intramedullary ependymoma: a real look into surgery, rehabilitation, and treatment with a little bit of humor.