Inspiration Stories
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.
From Patient to Author: Four-Time Cancer Survivor Pens Inspirational Children’s Book
— Categories: Categories: Categories: Categories: Adult Brain Pediatric Spine Posted on November 15, 2024
Caring husband and father opens up about his myxopapillary ependymoma diagnosis at age 12 and uses his experience to help others. "I've discovered that being a good father has nothing to do with mobility or physical limitations."
Keep Believing
— Categories: Categories: Brain Pediatric Posted on November 15, 2023
Ryan shares “I hope people learn to keep pushing and that it’s never too late. Even when I had cancer and I had to undergo my first surgery, we still kept hope and we never gave up. So keep believing and it's never too late.”
The Sky Is the Limit
— Categories: Categories: Adult Pediatric Posted on April 28, 2022
Fresh out of dental school, newly married, and in the best shape of his life, the last thing Kyle expected is was a cancer diagnosis. His story offers hope to others.
Buy the Tickets!
— Categories: Categories: Categories: Adult Brain Pediatric Posted on March 23, 2022
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.
On a Mission
— Categories: Categories: Categories: Adult Pediatric Spine Posted on December 8, 2021
After battling ependymoma and a recurrence, Taylor is on a mission to be a voice, advocate, and friend to those who need it most fighting this disease.
Keep Focused and Stay Strong
— Categories: Categories: Categories: Adult Pediatric Spine Posted on November 19, 2021
A desperate mother in the UK fights for treatment options for her young adult daughter with spinal ependymoma. This remarkable story between care partners, the CERN foundation, medical providers and ependymoma experts shines a light on the importance of co
Ependymoma and Me
— Categories: Categories: Categories: Adult Pediatric Spine Posted on February 19, 2021
Leah was only 13 years old when she was diagnosed with ependymoma in her spine. Read her honest story of dealing with life after diagnosis. Leah’s experience inspired her to create a blog to share the realities of being a disabled woman living with pain.
Always Smiling
— Categories: Categories: Brain Pediatric Posted on September 24, 2020
Dontrell's mother, Charmaine, shares their story with an ependymoma diagnosis.
Molly Spreads Awareness By Using Her Voice
— Categories: Categories: Brain Pediatric Posted on July 29, 2020
Ependymoma survivor, Molly, shares how music was a huge part of her recovery and life.
Mother Shares Her Encouraging Message for Others
— Categories: Categories: Brain Pediatric Posted on July 29, 2020
Ependymoma parent, Monica, shares her son’s ependymoma story and encouraging messages for other ependy parents.
Family Shares Tips for Others with Ependymoma
— Categories: Categories: Brain Pediatric Posted on July 29, 2020
Ependymoma survivor, Haruki and his parents, share tips for others with ependymoma.
Children’s Book Released to Help Families Faced with an Illness
— Categories: Categories: Brain Pediatric Posted on January 19, 2020
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.
Success is Measured by the Impact We Make
— Categories: Categories: Brain Pediatric Posted on December 23, 2019
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.
Providing Support to Ependymoma Parents
— Categories: Categories: Brain Pediatric Posted on August 26, 2019
Tamiko helps other parents navigate through their journey as the moderator for an online ependymoma parents support group.
One in a Million
— Categories: Categories: Brain Pediatric Posted on May 20, 2019
As an ependymoma survivor for almost 30 years, Katy shares how she coped through treatments and how her life changed.
Miracle Boy Sharing Hope
— Categories: Categories: Brain Pediatric Posted on January 18, 2019
At age 11, Ian is sharing hope to the world and to those battling ependymoma that need an inspiration.
Sofia the Warrior
— Categories: Categories: Pediatric Spine Posted on December 4, 2017
After Sofia slipped on the wet tile floor, doctors discovered a tumor located in her tailbone.
Every Child Deserves a Bright Future
— Categories: Categories: Brain Pediatric Posted on July 14, 2017
Chris' mother is determined to make a difference in his memory so she created Fighting Ependymoma that gives hope to children fighting ependymoma.
Burke Speaks at Ependymoma Awareness Day
— Categories: Categories: Brain Pediatric Posted on May 26, 2017
Burke shared his journey with ependymoma to patients and caregivers at the Ependymoma Awareness Day butterfly release on May 8, 2017.
Mother Writes Book to Help Others Cope
— Categories: Categories: Brain Pediatric Posted on October 18, 2016
Shawn’s mother writes a book, A Sippy Cup of Chemo, to help other brain tumor families travelling down the same path.
Imagine
— Categories: Categories: Brain Pediatric Posted on July 26, 2016
Henry’s mom shares a poem of the challenges faced when coping with an ependymoma and the importance of Childhood Cancer Awareness Month.
Living Each Day to the Fullest
— Categories: Categories: Pediatric Spine Posted on March 24, 2016
After falling on a playground at school, Sophia cried for days in pain. Doctors later discovered a tumor in her spine.
Blayne Overcomes Ependymoma
— Categories: Categories: Brain Pediatric Posted on February 29, 2016
Blayne’s parents discovered a brain tumor when he was just a toddler. Now at age 20, he has overcome his treatment side effects.
Sienna’s Hope
— Categories: Categories: Brain Pediatric Posted on November 30, 2015
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.
The Day Our Lives Changed Forever
— Categories: Categories: Brain Pediatric Posted on September 18, 2015
Doctors told Ava’s family that she had a brain mass and needed to have surgery. They discovered a grade III anaplastic ependymoma.
Dismuke Family Speaks at the 2015 Ependymoma Awareness Day
— Categories: Categories: Brain Pediatric Posted on May 25, 2015
Ashley shares Ingram’s journey with anaplastic ependymoma to patients and caregivers at the 2015 Ependymoma Awareness Day.
A Mother Takes Matters Into Her Own Hands
— Categories: Categories: Pediatric Spine Posted on April 25, 2015
With the lack of funding and more research needed for myxopapillary ependymoma, a mother decides awareness for this rare cancer.
Emma Continues to Smile Through Cancer
— Categories: Categories: Brain Pediatric Posted on December 17, 2014
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 Brings Hope to Others
— Categories: Categories: Brain Pediatric Posted on September 15, 2014
Adam, diagnosed with grade III ependymoma, wanted to help other kids that are going through similar experiences by shaving his head.
Sebastian’s Mother Determined to Beat Cancer
— Categories: Categories: Brain Pediatric Posted on June 10, 2014
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.
Mother Creates Awareness to Find a Cure
— Categories: Categories: Brain Pediatric Posted on May 27, 2014
After Ethan was diagnosed with a posterior fossa ependymoma, his mother decided she can’t sit back and do nothing.
Building a Legacy in Honour of Connor Dawes
— Categories: Categories: Brain Pediatric Posted on February 11, 2014
After Robert passed away from anaplastic ependymoma, his mom and family honour him by creating the RCD Foundation.
Making The Most of Every Day With Ethan
— Categories: Categories: Brain Pediatric Posted on October 30, 2013
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.
Morissa is One Tough Cookie
— Categories: Categories: Pediatric Spine Posted on July 26, 2013
Mandy, Morissa’s mom, went to numerous doctors to finally find out that her daughter was diagnosed with a spinal myxopapillary ependymoma.
Ian Speaks At Ependymoma Awareness Day
— Categories: Categories: Brain Pediatric Posted on May 2, 2013
Ian shares his sons story, Colin, who was diagnosed with anaplastic ependymoma at age two, during the 2013 Ependymoma Awareness Day.
Kimberly Delivers Speech At Butterfly Release
— Categories: Categories: Brain Pediatric Posted on April 24, 2013
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.
Brave Maisie
— Categories: Categories: Brain Pediatric Posted on March 1, 2013
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.
Taking One Step At A Time
— Categories: Categories: Brain Pediatric Posted on January 25, 2013
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.
Shelby’s Story
— Categories: Categories: Brain Pediatric Posted on November 21, 2012
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.
Ivory’s Mother Continues To Hope
— Categories: Categories: Brain Pediatric Posted on October 4, 2012
Julie shares her advice and experiences as a mother of Ivory, diagnosed with grade II ependymoma.
Zsila Overcomes Ependymoma and Gives Back
— Categories: Categories: Brain Pediatric Posted on August 6, 2012
After Zsila was diagnosed with grade II ependymoma in 1994, she decided to give back and become a Pediatric Neoro-Oncologist.
Mother Gives Advice on Newly Diagnosed
— Categories: Categories: Brain Pediatric Posted on June 17, 2012
Sue, Julia’s mother, shares her advice and experiences that she has learned from her daughter’s battle with ependymoma.
Eric Honors His Daughter
— Categories: Categories: Brain Pediatric Posted on May 8, 2012
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.
Baby Minty’s Story
— Categories: Categories: Brain Pediatric Posted on May 2, 2012
Mei Lai shares her story about her daughter, Minty, who was diagnosed with malignant anaplastic ependymoma.
Alexa’s Gifts of Hope Foundation
— Categories: Categories: Brain Pediatric Posted on March 11, 2012
Alexa’s Gifts of Hope Foundation raises money for pediatric brain tumor research and helps support children who are afflicted with ependymoma.