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.
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.
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
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.
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.
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.
Staying the Course: Believe
— Categories: Categories: Adult Brain Posted on June 19, 2020
Sean overcomes his ependymoma diagnosis and recurrence with a fighter mindset.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.”
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.
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.
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.
Mother Diagnosed Never Gives Up
— Categories: Categories: Adult Brain Posted on September 27, 2012
Jennifer lives by the motto, “Never, never, never give up.”
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.
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.
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.