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.
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.”
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.
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
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.
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, Anthony, shares his journey with ependymoma and a motivating message.
Sean overcomes his ependymoma diagnosis and recurrence with a fighter mindset.
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.
Amy shares how her ependymoma tumor was removed from her spine and that led her to pay it forward.
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.
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.
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.
While Hilary was traveling around Northeast Asia, she became sick and her tumour made its presence known – a grade II ependymoma.
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.
Neurologists called Steve with the news that they found an ependymoma tumor attached to his brain stem. This inspired him to write a book.
While Vickie was stepping out of the shower, she slipped and fell on her tailbone, causing excruciating pain. An MRI revealed a spinal 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.
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.
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 being diagnosed with myxopapillary ependymoma, Anne Moriarty struggled to get pregnant. Her outlook on life has been forever changed.
Coach Casey was diagnosed with spinal ependymoma and lives by the motto, “If it is to be, it is up to me.”
After excruciating neck pain, Tony’s MRI revealed an intramedullary ependymoma. After being diagnosed and rehabilitation, Tony had to adjust to his new body.
Sarah’s blog, documents her journey with intramedullary ependymoma: a real look into surgery, rehabilitation, and treatment with a little bit of humor.
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.
Jennifer lives by the motto, “Never, never, never give up.”
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.
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.
Kimberly, daughter of an ependymoma survivor, shares her advice and unique perspective on coping with the experience of having a loved one fight cancer.