Patients, care partners and medical professionals from around the world dedicate May 10, 2022 as the 11th annual Ependymoma Awareness Day!
Ependymoma Awareness Day
The CERN Foundation and the National Brain Tumor Society commemorated the 2022 Ependymoma Awareness Day during Brain Tumor Awareness Month! Ependymoma Awareness Day was held on May 10 to represent the ten different molecular groups of ependymoma and to bring attention to the diversity of the disease.
Held every year since 2012 as a global advocacy event, Ependymoma Awareness Day highlights the importance of an accurate diagnosis and the urgent need for better targeted treatments. Ependymoma Awareness Day (EAD) was established in 2012 by the CERN Foundation as part of a global effort to shine a light on this poorly understood disease.
Hundreds of butterflies were released to honor loved ones with ependymoma, caregivers, and to support ependymoma research. The delicate and beautiful butterfly was chosen to represent the spirit of the ependymoma community as a symbol of hope through change.The butterfly release was photographed and videotaped so that supporters around the world can participate and share in this moving event. View the butterfly release photo gallery.
The virtual program started with three ependymoma community members reading excerpts from books they have each written. These moving accounts are personal insights into what it is like to be diagnosed with or be the parent of a child with ependymoma. The next portion of the program featured footage from the Brain Tumor Awareness Month Butterfly Release Ceremony in Bethesda, MD. This event was held in connection to the Race for Hope DC and the National Brain Tumor Society flagship advocacy event, Head to the Hill. Brain and spinal cord community members involved included medical professionals, advocates, and patients and care partners.
Dr. Gene Hwang - Associate Division Chief, Oncology at Children’s National
Eugene (Gene) Hwang, M.D., is part of the Children's National Hospital pediatric neuro-oncology team, focusing on treating children with brain tumors. Dr. Hwang has developed and led many novel early phase therapeutic clinical trials with a focus on immunotherapeutic trials, and he also leads trials focused on gene therapy and new, targeted agents. For each patient, Dr. Hwang carefully considers the best possible options for treatment, trying new, cutting edge treatments coupled with the best available known therapies.
Terri Armstrong, PhD - Deputy Chief of the Neuro-Oncology Branch at the National Institutes of Health
Terri Armstrong has been instrumental in helping us understand the impact of the treatment on the patient and ways to improve symptom management, educate providers, and provide support to patients and families living with the disease. She is an advisor to the CERN Foundation and pioneer of outcome research in neuro oncology. The CERN Foundation model led Drs. Gilbert and Armstrong to a develop a new program at NCI, called NCI-CONNECT through the 21st Century Cures Act Moonshot, that aims to advance the understanding of 12 rare CNS tumors, including ependymoma, by establishing and fostering patient-advocacy-provider partnerships and networks to improve approaches to care and treatment. NBTS is excited to partner with the NIH in this endeavor.
Sharon Paradis - Ependymoma mom, son Finn diagnosed at 20 months old
In 2020 when Finn was just 20-months-old, he was rushed to emergency surgery. The cause – an anaplastic ependymoma brain tumor. He had a very low chance of surviving and his parents were told to prepare for the worst. After a scary surgery, he began 19 months of successful treatment and hopefully soon will be declared cancer free. Now, at age 3 this miracle boy is sharing hope to the world and to those battling ependymoma that need inspiration.
“We are a group of people who span the globe and although this is a family none of us wish to be a part of, we are a family nonetheless. Today, I am speaking for those who can’t, I am speaking for those diagnosed with a “rare” cancer, and I am speaking because I am a mom, who can.”
Matt Verich - Ependymoma survivor and patient at Walter Reed Military Hospital
Matt is a Space Operations Subject Matter Expert supporting USSPACECOM and the broader national security space community. He joined MITRE after 27-years in a variety of Joint and Navy operational and staff assignments worldwide. He is a Joint Qualified Officer and lifelong learner. He was going through treatment for melanoma when it was discovered that he had ependymoma. He is passionate about advocating for patients with rare disease and recognizes the importance of education and support. Matt and his wife Allison live in Alexandria, Virginia with their three children and he is a current patient at Walter Reed Military Hospital .
Matt shares “If there is one theme to my time at the podium this evening it is: GRATITUDE. I am grateful for my wife, Allison – the President and CEO of my own personal care team. Grateful for the doctors at Walter Reed. Grateful for many friends and family and strangers who have prayed for me and supported me and my family. And grateful for organizations like CERN, and the work you do to support patients and researchers to find better outcomes.”
Share Your Story on Ependymoma Awareness Day
As a part of Ependymoma Awareness Day, the National Brain Tumor Society and the CERN Foundation held three different virtual zoom meetings for ependymoma survivors and care partners to share their stories. This special opportunity was designed to inspire and empower, serving as a reminder that having a rare disease does not mean you are alone. A total of over 35 patients and care partners came together to participate in this important effort! Participants were encouraged to share details about their diagnosis and treatment, share a struggle or success they were currently facing, or share anything that felt most important at the moment. The virtual session was a special time to connect with others in the ependymoma community. There were powerful and emotional moments and participant Tiffany commented “Last night was such an encouragement!”
Ependymoma Awareness Outreach
On a local level, the ependymoma community participated in activities to create awareness about ependymoma where they live. In a groundswell of international support, patients, care partners, professionals and advocates participated in a variety of events marking May 10, 2022 as Ependymoma Awareness Day. Read the 2022 Ependymoma Awareness Day Outreach Report for more information.
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Let Us Hear From You!
We would love to hear from you! Please feel free to share your experiences with us and submit information and pictures of your own activities so that we may include them in future events on our website, giving inspiration and direction to others as they get involved in Ependymoma Awareness Day! Contact us for help on ways to host your own event!
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