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.
Dwight lives with his wife in South Carolina on five acres. In this Inspiration Story, he writes about his experience with ongoing symptoms that eventually lead to an ependymoma diagnosis. As a man in his early eighties, Dwight describes in detail how he n
Tiffany shares important advice she has learned because of her brain tumor diagnosis. Despite facing multiple recurrences and undergoing numerous treatments, she uses her voice to advocate and spread awareness for the brain tumor community.
Dontrell's mother, Charmaine, shares their story with an ependymoma diagnosis.
Ependymoma survivor, Molly, shares how music was a huge part of her recovery and life.
Ependymoma parent, Monica, shares her son’s ependymoma story and encouraging messages for other ependy parents.
Ependymoma survivor, Haruki and his parents, share tips for others with ependymoma.
Sean overcomes his ependymoma diagnosis and recurrence with a fighter mindset.
Samarrah, a social worker and writer, launched a children’s picture book that helps families with a child who has been diagnosed with a brain tumor or other critical illness.
Since being diagnosed with an anaplastic ependymoma, Eric has dedicated his time and energy to giving back to kids and teens to put an end to child abuse, bullying, as well as life-threatening childhood illnesses.
Tamiko helps other parents navigate through their journey as the moderator for an online ependymoma parents support group.
As an ependymoma survivor for almost 30 years, Katy shares how she coped through treatments and how her life changed.
At age 11, Ian is sharing hope to the world and to those battling ependymoma that need an inspiration.
Gabrielle learned how to live in the here and now.
Kristina overcomes ependymoma treatment and gains a new perspective on life.
Chris' mother is determined to make a difference in his memory so she created Fighting Ependymoma that gives hope to children fighting ependymoma.
While Hilary was traveling around Northeast Asia, she became sick and her tumour made its presence known – a grade II ependymoma.
Burke shared his journey with ependymoma to patients and caregivers at the Ependymoma Awareness Day butterfly release on May 8, 2017.
Allie and her father both had brain surgery to remove a tumor resulting in a deeper relationship.
Adam shares his experiences by writing a book that includes quotes that gave him encouragement during his ependymoma treatment.
Shawn’s mother writes a book, A Sippy Cup of Chemo, to help other brain tumor families travelling down the same path.
Henry’s mom shares a poem of the challenges faced when coping with an ependymoma and the importance of Childhood Cancer Awareness Month.
Blayne’s parents discovered a brain tumor when he was just a toddler. Now at age 20, he has overcome his treatment side effects.
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.
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.
Adam, diagnosed with grade III ependymoma, wanted to help other kids that are going through similar experiences by shaving his head.
For the past fourteen years, Linda has overcome two craniotomies, stereotactic radiotherapy and hopes her story will help others with similar circumstances.
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 having unusual blackouts and changes with his vision, Trevor’s scans revealed an ependymoma in his left occipital lobe.
After Robert passed away from anaplastic ependymoma, his mom and family honour him by creating the RCD Foundation.
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.
Ian shares his sons story, Colin, who was diagnosed with anaplastic ependymoma at age two, during the 2013 Ependymoma Awareness Day.
Kimberly honors the memory of her son, Ryan, at the 2013 Ependymoma Awareness Day. Ryan was diagnosed with ependymoma in 2007 and sadly lost his battle on May 26, 2012.
Maisie was diagnosed with supratentorial anaplastic ependymoma at the age of three. She has no idea how strong she really was and still is to this day.
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.
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 lives by the motto, “Never, never, never give up.”
After Zsila was diagnosed with grade II ependymoma in 1994, she decided to give back and become a Pediatric Neoro-Oncologist.
Greg was diagnosed with grade II ependymoma and then treated. He shares his advice and his new enthusiasm for life after no signs of regrowth.
Sue, Julia’s mother, shares her advice and experiences that she has learned from her daughter’s battle with ependymoma.
Eric delivers a speech at the 2012 Ependymoma Awareness Day butterfly release to honor his daughter, Kayla, who passed away at the age of 12 after battling ependymoma.
Mei Lai shares her story about her daughter, Minty, who was diagnosed with malignant anaplastic 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.
Alexa’s Gifts of Hope Foundation raises money for pediatric brain tumor research and helps support children who are afflicted with 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.