How you can show your support for Ependymoma Awareness Day
How you can show your support for Ependymoma Awareness Day
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Show Your Support for Gray May Your Way

Image. A woman stand admiring a butterfly on her hand at Ependymoma Awareness Day.

Ependymoma Awareness Day

Now in its 10th year, this campaign is an international effort from the CERN Foundation and the National Brain Tumor Society in partnership with medical professionals, patients, care partners, and other advocacy groups from around the world. Together, we have designated May 10, 2021 as Ependymoma Awareness Day as a part of Brain Tumor Awareness Month.
The CERN Foundation will commemorate Ependymoma Awareness Day with a live-streamed virtual event that will take place on May 10, 2021 at 1PM EST on the CERN website and Facebook Live. The 30-minute program will feature educational and awareness content from CERN Advisors and Members, clips from previous EAD events, key issues from the ependymoma community, and will conclude with a butterfly release.
Show your support for Gray May your way! 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 support, empower, and amplify the voice of the brain tumor community in the following ways:
  • Register for the 2021 Ependymoma Awareness Day virtual event on May 10 at 1PM EST by emailing administrator@cern-foundation.org or join the Facebook event.
  • Create your own personal fundraising page for your Ependymoma Awareness Day Event! As an incentive, team leaders that raise over $10,000 by April are eligible to receive their own at-home live butterfly release.
  • Support the Ependymoma Fund by purchasing a butterfly! For every donation over $25, a butterfly will be released at the virtual butterfly release in May.
  • Get creative with the CERN butterfly coloring page, chalk art, and Hands for Hope activities. Make sure to tag us on your social media with the hashtags #CERNButterfly #epENDymoma #hands4hope #GrayMay #TheGrayscale #GoGrayinMay #BTAM.
  • Share information on ependymoma with another person who has never heard of it! Document your awareness efforts on Facebook, Twitter, Instagram, or blog and use the hashtags #CERNButterfly #epENDymoma #hands4hope #GrayMay #TheGrayscale #GoGrayinMay #BTAM.
  • Contact your local officials and ask your local government or ministry of health to recognize May 10, 2021 as Ependymoma Awareness Day.
  • Tell your medical team about Ependymoma Awareness Day! Forward this email to three of your practicing clinicians or medical providers to raise awareness.
For more ideas, read how others around the world have commemorated Ependymoma Awareness Day.
For more information, visit the Ependymoma Awareness Day website or contact us at administrator@cern-foundation.org.

Head to the Hill

The grayest clouds often produce the most powerful lightning bolts.
On May 4, share your story on the Hill and advocate for the federal government to make strategic investments in brain tumor research, improve health care delivery and quality of life, reduce health disparities, and raise the priority level for our community’s urgent needs.

Ependymoma and Me

By Leah C.
Leah was only 13 years old when she was diagnosed with ependymoma in her spine.
"My advice to anyone dealing with ependymoma is to be kind and patient with yourself! There is no time limit on recovery and healing; take all the time you need and make sure you talk to someone, anyone! No matter how alone you feel, there are people out there who get how you are feeling and will help support you through it."
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.
 
Make a gift
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. Under “Direct My Gift to Support,” remember to select the Ependymoma Research and Education Fund.
Make A Gift
  Make a gift
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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