Tiffany's story of grace and grit, plus all Ependymoma Awareness Day info
Tiffany's story of grace and grit, plus all Ependymoma Awareness Day info
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Ependymoma Awareness Day Sparked Community
with Ependymoma Patients Like Tiffany

Tiffany and her family stand together for a family photo.
In 2022 on Ependymoma Awareness Day, the CERN Foundation welcomed ependymoma patients from around the country to join a Zoom support call and share their stories. Tiffany M., an ependymoma patient who was diagnosed in 2014, participated in the call. As a mom to seven, her days were spent homeschooling her kids, taking kids to extracurricular activities, doing projects, and visiting friends. All of a sudden, life changed completely. Her faith and family were the two driving forces behind her “must keep moving forward attitude” in those early days.
For many, a cancer diagnosis can be a lonely experience. With a rare disease, it can seem like no one truly understands what the patient is experiencing. Events like Ependymoma Awareness Day can help foster community when people need it the most, creating a welcoming space for individuals to exchange stories and form lasting bonds as members of the brain and spinal cord tumor community.
Join patients like Tiffany, care partners, friends, and family for Ependymoma Awareness Day this year on Wednesday, May 10, in our Virtual Community Gathering starting at 12 p.m. ET.
Images of the CERN community - all ages from all states - showing how they're raising awareness on Ependymoma Awareness Day

Six Ways to Raise Awareness and Take Action During Brain Tumor Awareness Month

This May is Brain Tumor Awareness Month, and you can get involved from anywhere! On a local level, we urge you to participate in an ependymoma awareness activity, helping to create a greater understanding of the disease. You can raise awareness and take action in the following ways:
  • Get creative and participate in a butterfly-themed craft or art activity. Ideas include the CERN Butterfly Coloring Page, chalk art on the driveway, and CERN Hands for Hope activity to name a few.
  • Register your team for the National Brain Tumor Society Race for Hope DC on May 7, 2023, in Washington, D.C., and designate your team’s proceeds to the Ependymoma Fund!
  • Join us for Head to the Hill, NBTS's flagship advocacy event on May 8-9, 2023, in Washington, D.C. The CERN Butterfly Release will be held during the Head to the Hill Welcome Reception on May 8 at 4 p.m. in Bethesda, Maryland, and registration is required to attend.
  • Sign up for our Ependymoma Awareness Day - Virtual Community Gathering on May 10 — an opportunity designed to inspire and empower, serving as a reminder that having a rare disease does not mean you are alone.
  • Support the Ependymoma Fund! For every donation over $25, a butterfly will be released at the 2023 CERN Butterfly Release. Video from the event will be shared on May 10.
  • Fundraise Your Way! Plan your own Ependymoma Awareness Day activity, and we’ll give you the resources to make your fundraiser a success.! Ask for your support to be directed to the Ependymoma Fund.
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Support the Ependymoma Fund for Research and Education
With your generous support, we will continue to expand our efforts to improve the care and outcome of people with ependymoma.
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The CERN Foundation and the National Brain Tumor Society have joined forces to help people with ependymoma and advance ependymoma research toward the development of new and better treatments through the creation of the Ependymoma Fund for Research and Education. Today, the CERN Foundation is officially a designated program of the National Brain Tumor Society. Donations to the Ependymoma Fund for Research and Education will be made on the NBTS website and used to support research efforts that will benefit both ependymoma patients and research through CERN. Emphasis will be placed on CERN’s historical model of supporting work that translates basic science into clinical practice. The Fund will also address overcoming barriers to clinical trial accrual and the development of new clinical studies for ependymoma patients. Additional funds will be used to support educational efforts through print, media, and awareness events. The new collaborative Ependymoma Fund will continue CERN’s practice and tradition of involving and collaborating with other scientists, medical providers, foundations and supporters of ependymoma research.
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