CERN Inspiration

CERN Inspiration

ependymoma 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.

How to Submit a Story

Please submit a photo of yourself, a short bio (3-5 lines about you, where you live, what you do, what your passions are) and your personal message. For questions about submitting a story or to submit your inspiration story click here.

AdamMugSmallAn Extraordinary Destiny

Adam shares his experiences by writing a book that includes quotes that gave him encouragement during his ependymoma treatment.


ShawnSmallMugMother Writes Book to Help Others Cope

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.


FullSizeRenderSmallMugLiving Each Day to The Fullest

After falling on a playground at school, Sophia cried for days in pain. Doctors later discovered a tumor in her spine.


Blayne MugSmallBlayne Overcomes Ependymoma

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 Mug SmallSienna’s Hope

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.


IMG_20150821_093633smallmugThe Day Our Lives Changed Forever

Doctors told Ava’s family that she had a brain mass and needed to have surgery. They discovered a grade III anaplastic ependymoma.


Steve SmallMugDiagnosis Inspires Book, “If You Love Me, Take Me Now”

Neurologists called Steve with the news that they found an ependymoma tumor attached to his brain stem. This inspired him to write a book.


Ingram MugDismuke Family Speaks at the 2015 Ependymoma Awareness Day

Ashley shares Ingram’s journey with anaplastic ependymoma to patients and caregivers at the 2015 Ependymoma Awareness Day.


Samuel H.A Mother Decides To Take Matters Into Her Own Hands

With the lack of funding and more research needed for myxopapillary ependymoma, a mother decides to raise funds and awareness for this rare cancer.


Vickie88Ependymoma Does Not Define Us

While Vickie was stepping out of the shower, she slipped and fell on her tailbone, causing excruciating pain. An MRI revealed a spinal ependymoma.


Grade 3 EpendymomaLinda Shares Her Experiences to Help Others

For the past fourteen years, Linda has overcome two craniotomies, stereotactic radiotherapy and hopes her story will help others with similar circumstances.


Anaplastic EpendymomaEmma Continues to Smile Through Cancer

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.


Intramedullary Ependymoma

Learning to Live Everyday Like it is Our Last

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.


Grade 3 ependymomaAdam Brings Hope to Others

Adam, diagnosed with grade III ependymoma, wanted to help other kids that are going through similar experiences by shaving his head.


KimMugSmallKimberlee is a Fighter

Kimberlee was diagnosed with an ependymoma and had many physical and mental problems that she had to overcome.


Sebastian Small MugSebastian’s Mother Determined to Beat Cancer

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.


Posterior Fossa Ependymoma

Mother Creates Awareness to Find A Cure

After Ethan was diagnosed with a posterior fossa ependymoma, his mother decided she can’t sit back and do nothing.


Intramedullary Ependymoma

Chelsea’s “New Normal”

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

After having unusual blackouts and changes with his vision, Trevor’s scans revealed an ependymoma in his left occipital lobe.


Kim Wallgren

Wallgren Delivers Speech at Butterfly Release

Kim’s father was diagnosed with anaplastic ependymoma twelve years ago and she works as the Patient Liaison for the CERN Foundation.


Connor DawesBuilding a Legacy in Honour of Connor Dawes

After Robert passed away from anaplastic ependymoma, his mom and family honour him by creating the RCD Fund.


Ethan Davies

Making The Most of Every Day With Ethan

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.


Anne MoriartyEvery Cloud Has Its Silver Lining

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

Mandy, Morissa’s mom, went to numerous doctors to finally find out that her daughter was diagnosed with a spinal myxopapillary ependymoma.


Casey VogtLife Is More Than The X’s And O’s

Coach Casey was diagnosed with spinal ependymoma and lives by the motto, “If it is to be, it is up to me.”


Ian Hayward Mug

Ian Speaks At Ependymoma Awareness Day

Ian’s son, Colin, who was diagnosed with anaplastic ependymoma at age two, is now truly living again.


Kimberly Karp MugKimberly Delivers Speech At Butterfly Release

Kimberly honors the memory of her son, Ryan. Ryan was diagnosed with ependymoma in 2007 and sadly lost his battle on May 26, 2012.


Tony MasgioTony Adjusts to His New Body

After excruciating neck pain, Tony’s MRI revealed an intramedullary ependymoma. After being diagnosed and rehabilitation, Tony had to adjust to his new body.


Maisie MugBrave Maisie

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.


thumb_Sarah(1)Intramedullary Ependymoma - My Journey

Sarah’s blog, documents her journey with intramedullary ependymoma: a real look into surgery, rehabilitation, and treatment with a little bit of humor.


HannahTaking One Step At A Time

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 Mills MugKendal No Longer Takes Anything for Granted

Kendal spent a decade plagued with numbness, tingling, seizures, and numerous tests. He was finally diagnosed with an anaplastic ependymoma.


Missy MandelDiagnosis Inspires Missy To Help Others

Everyone told Missy that headaches and neck pain are normal signs of stress. She was later diagnosed with a benign intramedullary ependymoma.


ShelbyShelby’s Story

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 MugIvory’s Mother Continues To Hope

Julie shares her advice and experiences as a mother of Ivory, diagnosed with grade II ependymoma.


Jennifer MugMother Diagnosed Never Gives Up

Jennifer Manion lives by the motto, “Never, never, never give up.”



ZsilaZsila Overcomes Ependymoma and Gives Back

After Zsila was diagnosed with grade 2 ependymoma in 1994, she decided to give back and become a Pediatric Neoro-Oncologist.


Alexa MugFoundation Formed to Honor The Life of Alexa

Alexa’s Gifts of Hope Foundation raises money for pediatric brain tumor research and helps support children who are afflicted with ependymoma.


Chris MugChris Celebrates Ependymoma Awareness Day in England

Chris, along with his family and friends, held Ependymoma Awareness Day in North Yorkshire England on April 19th.


Butterfly Eric Eric Honors His Daughter

Eric delivers a speech at the butterfly release to honor his daughter, Kayla, who recently passed away at the age of 12 after battling ependymoma.


thumb_Boyden, GregBoyden Celebrates Life

Greg was diagnosed with stage II ependymoma and then treated. He shares his advice and his new enthusiasm for life after no signs of regrowth.


MintyBaby Minty’s Story

Mei Lai shares her story about her daughter, Minty, who was diagnosed with malignant anaplastic ependymoma.


Julia MeadMother Gives Advice on Newly Diagnosed

Sue, Julia’s mother, shares her advice and experiences that she has learned from her daughter’s battle with ependymoma.


Mark GreenDealing with the Weight of a Diagnosis

Mark was diagnosed with an anaplastic epenymoma. He shares his advice and wisdom on dealing with the diagnosis.


Matt CotcherWords of Wisdom from an Adult Ependymoma Survivor

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.


KimberlyOne Day At a Time

Kimberly, daughter of an ependymoma survivor, shares her advice and unique perspective on coping with the experience of having a loved one fight cancer.


BruceFive Pieces of Advice

Bruce, an ependymoma survivor, brain tumor advocate, facilitator of two brain tumor support groups, grandfather, believer, and teller of bad jokes shares his advice.