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.
— 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
— 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.
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.
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
— 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
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.
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.
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.
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
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.
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
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.
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.
Dontrell's mother, Charmaine, shares their story with an ependymoma diagnosis.
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.
Ependymoma survivor, Kevin, and his family, share what the CERN Foundation means to them and why awareness is important.
Ependymoma survivor, Molly, shares how music was a huge part of her recovery and life.
Ependymoma parent, Monica, shares her son’s ependymoma story and encouraging messages for other ependy parents.
Ependymoma survivor, Anthony, shares his journey with ependymoma and a motivating message.
Ependymoma survivor, Haruki and his parents, share tips for others with ependymoma.
Sean overcomes his ependymoma diagnosis and recurrence with a fighter mindset.
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.
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.
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.
Tamiko helps other parents navigate through their journey as the moderator for an online ependymoma parents support group.
Amy shares how her ependymoma tumor was removed from her spine and that led her to pay it forward.
As an ependymoma survivor for almost 30 years, Katy shares how she coped through treatments and how her life changed.
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.
At age 11, Ian is sharing hope to the world and to those battling ependymoma that need an inspiration.
Gabrielle learned how to live in the here and now.
Kristina overcomes ependymoma treatment and gains a new perspective on life.
Steven shares how he continues to perservere after having an ependymoma in his spinal cord.
Shannon continues to overcome limitations every day from her anaplastic ependymoma.
After Sofia slipped on the wet tile floor, doctors discovered a tumor located in her tailbone.
Prashant was misdiagnosed for months until an MRI revealed an ependymoma tumor in his spine.
Sarah discovered an ependymoma tumor blocking her spinal canal after two unmedicated C-sections.
Chris' mother is determined to make a difference in his memory so she created Fighting Ependymoma that gives hope to children fighting ependymoma.
While Hilary was traveling around Northeast Asia, she became sick and her tumour made its presence known – a grade II ependymoma.
Burke shared his journey with ependymoma to patients and caregivers at the Ependymoma Awareness Day butterfly release on May 8, 2017.
Allie and her father both had brain surgery to remove a tumor resulting in a deeper relationship.
Michelle's neurosurgeon discovered multiple tumors along her spine, but through it all she remains positive.
Adam shares his experiences by writing a book that includes quotes that gave him encouragement during his ependymoma treatment.
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.
After falling on a playground at school, Sophia cried for days in pain. Doctors later discovered a tumor in her spine.
Blayne’s parents discovered a brain tumor when he was just a toddler. Now at age 20, he has overcome his treatment side effects.
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.
Doctors told Ava’s family that she had a brain mass and needed to have surgery. They discovered a grade III anaplastic ependymoma.
Neurologists called Steve with the news that they found an ependymoma tumor attached to his brain stem. This inspired him to write a book.
Ashley shares Ingram’s journey with anaplastic ependymoma to patients and caregivers at the 2015 Ependymoma Awareness Day.
With the lack of funding and more research needed for myxopapillary ependymoma, a mother decides awareness for this rare cancer.
While Vickie was stepping out of the shower, she slipped and fell on her tailbone, causing excruciating pain. An MRI revealed a spinal ependymoma.
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.
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, diagnosed with grade III ependymoma, wanted to help other kids that are going through similar experiences by shaving his head.
For the past fourteen years, Linda has overcome two craniotomies, stereotactic radiotherapy and hopes her story will help others with similar circumstances.
Kimberlee was diagnosed with an ependymoma and had many physical and mental problems that she had to overcome.
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.
After Ethan was diagnosed with a posterior fossa ependymoma, his mother decided she can’t sit back and do nothing.
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.
After having unusual blackouts and changes with his vision, Trevor’s scans revealed an ependymoma in his left occipital lobe.
After Robert passed away from anaplastic ependymoma, his mom and family honour him by creating the RCD Foundation.
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.
After being diagnosed with myxopapillary ependymoma, Anne Moriarty struggled to get pregnant. Her outlook on life has been forever changed.
Mandy, Morissa’s mom, went to numerous doctors to finally find out that her daughter was diagnosed with a spinal myxopapillary ependymoma.
Coach Casey was diagnosed with spinal ependymoma and lives by the motto, “If it is to be, it is up to me.”
Ian shares his sons story, Colin, who was diagnosed with anaplastic ependymoma at age two, during the 2013 Ependymoma Awareness Day.
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.
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 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.
Sarah’s blog, documents her journey with intramedullary ependymoma: a real look into surgery, rehabilitation, and treatment with a little bit of humor.
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 spent a decade plagued with numbness, tingling, seizures, and numerous tests. He was finally diagnosed with an anaplastic ependymoma.
Everyone told Missy that headaches and neck pain are normal signs of stress. She was later diagnosed with a benign intramedullary ependymoma.
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.
Julie shares her advice and experiences as a mother of Ivory, diagnosed with grade II ependymoma.
Jennifer lives by the motto, “Never, never, never give up.”
After Zsila was diagnosed with grade II ependymoma in 1994, she decided to give back and become a Pediatric Neoro-Oncologist.
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.
Sue, Julia’s mother, shares her advice and experiences that she has learned from her daughter’s battle with ependymoma.
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.
Mei Lai shares her story about her daughter, Minty, who was diagnosed with malignant anaplastic ependymoma.
Mark was diagnosed with an anaplastic epenymoma. He shares his advice and wisdom on dealing with the diagnosis.
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 raises money for pediatric brain tumor research and helps support children who are afflicted with ependymoma.
Kimberly, daughter of an ependymoma survivor, shares her advice and unique perspective on coping with the experience of having a loved one fight cancer.