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."
Silent Thunder - A Journey of Grace with a Rare Tumour
— Categories: Categories: Adult Spine Posted on April 3, 2024
I have learnt so much and still have so much to be grateful for. This is my journey with an ependymoma inside of my spinal cord, which led to me being a disabled person. I now have a new normal, AND I AM HAPPY AND CONTENT!
Fortitude and Acceptance
— Categories: Categories: Adult Brain Posted on January 26, 2024
John, a professional writer, describes his personal story with an ependymoma diagnosis, treatment, and survivorship. John shares “I learned the only miracle in life is the fortitude to face and accept things, and I already have that.”
Going from Healthcare Delivery to Healthcare Recipient
— Categories: Categories: Adult Spine Posted on December 13, 2023
After years of unexplained symptoms, Amy went from nurse and clinical researcher in the field of pediatric neuro-oncology to being on the other side as a patient diagnosed with a rare spinal tumor. Amy gives personal insight and wisdom into her experience.
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.”
Healing and Resilience
— Posted on September 22, 2023
Hilary describes her personal experience with navigating a spinal tumor diagnosis in Australia and shares, “With the combination of medical science, personal determination, and the encouragement of those around me, I've discovered a newfound strength that
Ependymoma Awareness Day Sparked Community with Ependymoma Patients Like Tiffany
— Posted on April 12, 2023
Despite multiple surgeries and setbacks for ependymoma survivor Tiffany, she continues to persevere with the help of family, friends, and the support of the ependymoma community.
Pregnant Mother Navigates Care During the COVID-19 Lockdown and Celebrates her Miracle Baby
— Categories: Categories: Adult Spine Posted on November 28, 2022
Read Jenna’s remarkable story of discovering an ependymoma diagnosis while she was pregnant and how navigating care during the COVID-19 lockdown added challenge and concern for her entire family.
The Experience
— Categories: Categories: Adult Brain Posted on October 21, 2022
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
What I wish people knew about what it is like to be a young adult with a brain tumor.
— Posted on September 23, 2022
Savannah, 21, is a senior psychology major at the University of Tennessee, Knoxville. She is passionate about helping others and plans to attend graduate school to fulfill her dream of becoming a clinical mental health counselor
A Story of Recovery from Spinal Cord Tumor Surgery
— Categories: Categories: Adult Spine Posted on May 18, 2022
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.
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.
Three Important Things I learned from my Ependymoma Journey
— Categories: Categories: Adult Spine Posted on January 12, 2022
At 41 years of age, with four kids, an active and healthy lifestyle, a satisfying career, Pierre’s life was put on pause when some unrelated tests led all the pieces of a puzzle of symptoms to suddenly fall into place and paint a shocking picture. When he
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.
Retiree Overcomes Challenges with Diagnosis, Surgery, and Recovery
— Categories: Categories: Adult Spine Posted on December 3, 2020
Rusty experienced symptoms related to spinal ependymoma for years before he received an official diagnosis. Even though it is a slow process, he is working hard towards recovery and hopes to see more improvements in the future.
Always Smiling
— Categories: Categories: Brain Pediatric Posted on September 24, 2020
Dontrell's mother, Charmaine, shares their story with an ependymoma diagnosis.
Press Forward
— Categories: Categories: Adult Spine Posted on August 19, 2020
During a family trip, Jill knew something was seriously wrong when she started experiencing multiple different neurological symptoms. Jill offers encouraging advice about pressing forward during obstacles and the power of connecting with others.
Taking Action to Drive Better Ependymoma Results
— Categories: Categories: Adult Spine Posted on July 29, 2020
Ependymoma survivor, Kevin, and his family, share what the CERN Foundation means to them and why awareness is important.
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.
Motivating Message from Ependymoma Survivor
— Categories: Categories: Adult Spine Posted on July 29, 2020
Ependymoma survivor, Anthony, shares his journey with ependymoma and a motivating message.
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.
Staying the Course: Believe
— Categories: Categories: Adult Brain Posted on June 19, 2020
Sean overcomes his ependymoma diagnosis and recurrence with a fighter mindset.
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.
Beacon of Hope
— Categories: Categories: Adult Spine Posted on December 23, 2019
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.
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.
10-Year Spinal Ependymoma Survivor Feels Blessed
— Categories: Categories: Adult Spine Posted on May 20, 2019
Amy shares how her ependymoma tumor was removed from her spine and that led her to pay it forward.
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.
Maintaining Hope: Three Decades With Ependymoma
— Categories: Categories: Adult Spine Posted on February 5, 2019
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.
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.
Enough is Enough
— Categories: Categories: Adult Brain Posted on November 30, 2018
Gabrielle learned how to live in the here and now.
Gaining a New Perspective
— Categories: Categories: Adult Brain Posted on October 26, 2018
Kristina overcomes ependymoma treatment and gains a new perspective on life.
Determined to Defeat Ependymoma
— Categories: Categories: Adult Spine Posted on May 23, 2018
Steven shares how he continues to perservere after having an ependymoma in his spinal cord.
I’m Here!
— Categories: Categories: Adult Spine Posted on April 27, 2018
Shannon continues to overcome limitations every day from her anaplastic ependymoma.
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.
Life is a Roller Coaster
— Categories: Categories: Adult Spine Posted on October 31, 2017
Prashant was misdiagnosed for months until an MRI revealed an ependymoma tumor in his spine.
Shedding Light on This Rare Disease
— Categories: Categories: Adult Spine Posted on September 27, 2017
Sarah discovered an ependymoma tumor blocking her spinal canal after two unmedicated C-sections.
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.
Along For the Ride
— Categories: Categories: Adult Brain Posted on June 7, 2017
While Hilary was traveling around Northeast Asia, she became sick and her tumour made its presence known – a grade II 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.
A Unique Bond Between a Father and Daughter
— Categories: Categories: Adult Brain Posted on April 24, 2017
Allie and her father both had brain surgery to remove a tumor resulting in a deeper relationship.
Michelle My Hero
— Categories: Categories: Adult Spine Posted on January 18, 2017
Michelle's neurosurgeon discovered multiple tumors along her spine, but through it all she remains positive.
An Extraordinary Destiny
— Categories: Categories: Adult Brain Posted on November 2, 2016
Adam shares his experiences by writing a book that includes quotes that gave him encouragement during his ependymoma treatment.
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.
A Family’s Diagnosis Inspires Book, “If You Love Me, Take Me Now”
— Categories: Categories: Adult Brain Posted on June 4, 2015
Neurologists called Steve with the news that they found an ependymoma tumor attached to his brain stem. This inspired him to write a book.
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.
Ependymoma Does Not Define Us
— Categories: Categories: Adult Spine Posted on January 16, 2015
While Vickie was stepping out of the shower, she slipped and fell on her tailbone, causing excruciating pain. An MRI revealed a spinal ependymoma.
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.
Learning to Live Everyday Like It Is Our Last
— Categories: Categories: Adult Spine Posted on November 22, 2014
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 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.
Linda Shares Her Experiences To Help Others
— Categories: Categories: Adult Brain Posted on August 24, 2014
For the past fourteen years, Linda has overcome two craniotomies, stereotactic radiotherapy and hopes her story will help others with similar circumstances.
Kimberlee is a Fighter
— Categories: Categories: Adult Brain Posted on July 11, 2014
Kimberlee was diagnosed with an ependymoma and had many physical and mental problems that she had to overcome.
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.
Chelsea’s “New Normal”
— Categories: Categories: Adult Spine Posted on May 6, 2014
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.
A New Perspective on Life
— Categories: Categories: Adult Brain Posted on April 14, 2014
After having unusual blackouts and changes with his vision, Trevor’s scans revealed an ependymoma in his left occipital lobe.
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.
Every Cloud Has Its Silver Lining
— Categories: Categories: Adult Spine Posted on September 10, 2013
After being diagnosed with myxopapillary ependymoma, Anne Moriarty struggled to get pregnant. Her outlook on life has been forever changed.
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.
Life Is More Than The X’s And O’s
— Categories: Categories: Adult Spine Posted on June 11, 2013
Coach Casey was diagnosed with spinal ependymoma and lives by the motto, “If it is to be, it is up to me.”
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.
Tony Adjusts to His New Body
— Categories: Categories: Adult Spine Posted on April 12, 2013
After excruciating neck pain, Tony’s MRI revealed an intramedullary ependymoma. After being diagnosed and rehabilitation, Tony had to adjust to his new body.
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.
Intramedullary Ependymoma – My Journey
— Categories: Categories: Adult Spine Posted on February 13, 2013
Sarah’s blog, documents her journey with intramedullary ependymoma: a real look into surgery, rehabilitation, and treatment with a little bit of humor.
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.
Kendal No Longer Takes Anything for Granted
— Categories: Categories: Adult Brain Posted on January 2, 2013
Kendal spent a decade plagued with numbness, tingling, seizures, and numerous tests. He was finally diagnosed with an anaplastic ependymoma.
Diagnosis Inspires Missy to Help Others
— Categories: Categories: Adult Spine Posted on December 1, 2012
Everyone told Missy that headaches and neck pain are normal signs of stress. She was later diagnosed with a benign intramedullary ependymoma.
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.
Mother Diagnosed Never Gives Up
— Categories: Categories: Adult Brain Posted on September 27, 2012
Jennifer lives by the motto, “Never, never, never give up.”
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.
Boyden Celebrates Life
— Categories: Categories: Adult Brain Posted on July 7, 2012
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.
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.
Dealing with the Weight of a Diagnosis
— Categories: Categories: Adult Brain Posted on April 14, 2012
Mark was diagnosed with an anaplastic epenymoma. He shares his advice and wisdom on dealing with the diagnosis.
Words of Wisdom from Adult Ependymoma Survivor
— Categories: Categories: Adult Brain Posted on March 25, 2012
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
— 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.
One Day at a Time
— Categories: Categories: Adult Brain Posted on February 16, 2012
Kimberly, daughter of an ependymoma survivor, shares her advice and unique perspective on coping with the experience of having a loved one fight cancer.
Five Pieces of Advice
— Categories: Categories: Adult Brain Posted on January 4, 2012
Bruce, an ependymoma survivor, brain tumor advocate, facilitator of two brain tumor support groups, grandfather, believer, and teller of bad jokes shares his advice.