This portion of the website is dedicated to patients and caregivers by allowing them to share their 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.
How to Submit a Story
Please submit a photo of yourself, a short bio (3-5 lines about you, where you live, what you do, what your passions are) and your personal message. For questions about submitting a story or to submit your inspiration story click here.
Kylie’s blog, Sienna’s Hope, documents her daughters journey with anaplastic ependymoma. This has helped her cope, but she also wanted to share her blog with other families facing the same battles.
Doctors told Ava’s family that she had a brain mass and needed to have surgery. They discovered a grade III anaplastic ependymoma.
Neurologists called Steve with the news that they found an ependymoma tumor attached to his brain stem. This inspired him to write a book.
Ashley shares Ingram’s journey with anaplastic ependymoma to patients and caregivers at the 2015 Ependymoma Awareness Day.
With the lack of funding and more research needed for myxopapillary ependymoma, a mother decides to raise funds and 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.
For the past fourteen years, Linda has overcome two craniotomies, stereotactic radiotherapy and hopes her story will help others with similar circumstances.
When Emma was just 13-months-old, her pediatrician noticed a slight drooping on one side of her face, which was caused by an anaplastic 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.
Adam, diagnosed with grade III ependymoma, wanted to help other kids that are going through similar experiences by shaving his head.
Kimberlee was diagnosed with an ependymoma and had many physical and mental problems that she had to overcome.
Sebastian, who was only 7-years-old, began complaining of headaches and vomiting. His mother, who also battled cancer, discovered her son had a grade II anaplastic posterior fossa ependymoma.
After Ethan was diagnosed with a posterior fossa ependymoma, his mother decided she can’t sit back and do nothing.
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 having unusual blackouts and changes with his vision, Trevor’s scans revealed an ependymoma in his left occipital lobe.
Kim’s father was diagnosed with anaplastic ependymoma twelve years ago and she works as the Patient Liaison for the CERN Foundation.
After Robert passed away from anaplastic ependymoma, his mom and family honour him by creating the RCD Fund.
When Ethan was only one, his family noticed something wasn’t quite right. He was later diagnosed with grade 2 ependymoma in the posterior fossa.
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.”
Ian’s son, Colin, who was diagnosed with anaplastic ependymoma at age two, is now truly living again.
Kimberly honors the memory of her son, Ryan. Ryan was diagnosed with ependymoma in 2007 and sadly lost his battle on May 26, 2012.
After excruciating neck pain, Tony’s MRI revealed an intramedullary ependymoma. After being diagnosed and rehabilitation, Tony had to adjust to his new body.
Maisie was diagnosed with supratentorial anaplastic ependymoma at the age of three. Her family started an organization that gives special dolls to sick children.
Sarah’s blog, documents her journey with intramedullary ependymoma: a real look into surgery, rehabilitation, and treatment with a little bit of humor.
Hannah doesn’t dwell on that past and believes that God put her on this earth for a reason, diagnosed with ependymoma at age four.
Kendal spent a decade plagued with numbness, tingling, seizures, and numerous tests. He was finally diagnosed with an anaplastic ependymoma.
Everyone told Missy that headaches and neck pain are normal signs of stress. She was later diagnosed with a benign intramedullary ependymoma.
When life gave Shelby lemons, she made lemonade and shared its sweetness with everyone she knew. She was diagnosed with grade III ependymoma at one.
Julie shares her advice and experiences as a mother of Ivory, diagnosed with grade II ependymoma.
Jennifer Manion lives by the motto, “Never, never, never give up.”
After Zsila was diagnosed with grade 2 ependymoma in 1994, she decided to give back and become a Pediatric Neoro-Oncologist.
Alexa’s Gifts of Hope Foundation raises money for pediatric brain tumor research and helps support children who are afflicted with ependymoma.
Chris, along with his family and friends, held Ependymoma Awareness Day in North Yorkshire England on April 19th.
Eric delivers a speech at the butterfly release to honor his daughter, Kayla, who recently passed away at the age of 12 after battling ependymoma.
Greg was diagnosed with stage II ependymoma and then treated. He shares his advice and his new enthusiasm for life after no signs of regrowth.
Mei Lai shares her story about her daughter, Minty, who was diagnosed with malignant anaplastic ependymoma.
Sue, Julia’s mother, shares her advice and experiences that she has learned from her daughter’s battle with ependymoma.
Mark was diagnosed with an anaplastic epenymoma. He shares his advice and wisdom on dealing with the diagnosis.
Matt was gracious to share with us his story of navigating through his journey with ependymoma. Read more as he shares his advice on dealing with the medical community and ependymoma.
Kimberly, daughter of an ependymoma survivor, shares her advice and unique perspective on coping with the experience of having a loved one fight cancer.
Bruce, an ependymoma survivor, brain tumor advocate, facilitator of two brain tumor support groups, grandfather, believer, and teller of bad jokes shares his advice.