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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.”

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.

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.

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