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.
When Ethan Davies 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 Vogt was diagnosed with spinal ependymoma and lives by the motto, “If it is to be, it is up to me.”
Ian Hayward’s son, Colin, who was diagnosed with anaplastic ependymoma at age two, is now truly living again.
Kimberly Karp honors the memory of her son, Ryan Kennedy. 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 Mills 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 3 ependymoma at one.
Julie shares her advice and experiences as a mother of Ivory, diagnosed with grade 2 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 Wenger 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 Meads mother, shares her advice and experiences that she has learned from her daughter’s battle with ependymoma.
Mark was recently 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 Blount, an ependymoma survivor, brain tumor advocate, facilitator of two brain tumor support groups, grandfather, believer, and teller of bad jokes shares his advice.