Contact Us FAQ’s
1. How can I get a referral support when seeking a second opinion?
CERN routinely connects patients and families with institutions and physicians that specialize in treating ependymoma. You can contact a medical institution directly or fill out our referral form and we will be happy to connect with you and identify potential options based on your needs.
2. How can I get a second opinion?
Seeking a second opinion is always a good option when dealing with rare diseases. You can seek out guidance at a medical center with expertise with ependymoma directly or conact us to learn more. If you are not able to travel, sometimes you can have your medical provider reach out to us directly and we can work with your team to make an appropriate connection. Please have your treating physician contact us.
3. Where can I find out more information about ependymoma?
The CERN Foundation is the only organization devoted solely to advancing ependymoma education, awareness, and research efforts. Our website includes information for patients and caregivers about treatment, diagnosis, clinical trials, symptom management and recurrence. It is a valuable resource for those affected by ependymoma, including patient stories. You can also sign up for e-news, follow us on Twitter and Facebook.
We created a guide as a resource for patients, caregivers and advocates. To view or download a free copy of the Ependymoma Guide, click here.
4. How do I contact the CERN Foundation?
You can contact us by our filling out our online form, by e-mail us at administrator@cern-foundation.org or by calling (844) 237-6674.
5. General Inquiries such as the following: What is my prognosis? Will my ependymoma recur? Is my current treatment regimen the best or most appropriate for my diagnosis?
Unfortunately, we are not able to answer questions such as the ones listed above via e-mail, telephone or other written communication. We encourage families to direct these questions to their medical providers. Dialog with your neuro oncologist might be helpful to uncover some answers or identify those topics that remain unknown. If you are still looking for answers, it might be helpful to seek a second opinion with a medical team that has experience with ependymoma.
6. Is ependymoma cancer?
This question is nuanced and requires careful consideration. Generaly, central nervous system (CNS) tumors are considered malignant if they are grade III or IV. However, low grade tumors can recur and therefore should be evaluated carefully. Ependymoma tumors are typically designated as low grade (grade I or II) or high grade (grade III). Ependymoma in the brain or spine may cause problems and cause symptoms that require treatment, despite the size or grade. Like other CNS tumors, low and high grade ependymoma can recur. Grading is a better representation of the tumor growth, aggressiveness, and prognosis. It is important to talk with your medical provider about this important topic. You can find out more about the characteristics of each type by reviewing our Pathology section of our website.
7. Do you know of any risk factors that would cause me to develop an ependymoma?
We do not have any specific known risk factors. A risk factor is an attribute, characteristic or exposure of an individual that increases the likelihood of developing a disease. CERN has expanded the work of our successful Ependymoma Outcomes Surveys to include the evaluation of potential risk factors for the occurrence of ependymoma as well as the evaluation of potential genomic changes that may lead to the development and progression of ependymoma.
8. Are there any possible hereditary or genetic links to ependymomas?
Ependymoma tumors with a hereditary link are generally in families with ependymomas or other specific cancers in multiple family members. If you or the patient is concerned about a potential hereditary link, you may want to pursue consultation at one of the CERN Foundation medical institutions or elsewhere where they have expertise in research and treatment of ependymomas. We would also suggest an evaluation by a cancer genetics group.
9. What clinical trials are available for adult and pediatric ependymomas?
It is best to discuss clinical trials as an option with your doctor and what trials may be available. You can find trials by visiting our ependymoma clinical trial page.
10. Where can I find research articles regarding the treatment, cause and prognosis of ependymomas?
We suggest that you either visit the News and Research area of the CERN Foundation website, which we update as we learn of new research OR access articles through PubMed. PubMed is the most up-to-date resource for published research. Please note: there is traditionally a 6-8 month lag time between the research submission and publication.
11. How do I make a donation to the CERN Foundation?
Make a donation to help support our mission! The CERN Foundation and the National Brain Tumor Society (NBTS) 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.
Donations to the Ependymoma Fund can be made on the NBTS website and used to support research efforts that will benefit both ependymoma patients and research through CERN. To donate to the Ependymoma Fund, go to the donation page and select “direct my gift” under the Gift Designation header. The drop-down menu will provide an option to support the Ependymoma Fund.
If you would prefer to donate by mail, please use this donation form and select the "Ependymoma Research and Education Fund with CERN" for the area of designation. All donations should be sent to National Brain Tumor Society, 55 Chapel Street, Suite 200, Newton, MA 02458.
12. How else can I get involved and bettering the quality of life in patients with ependymoma?
We are currently running a research project called the Ependymoma Outcomes Survey that addresses and seeks to improve quality of life issues in adult and pediatric patients with ependymomas. If you would like to be a part of this very important effort, please click here.
13. How can I share my story on the CERN Foundation’s website?
We love to receive stories of hope and inspiration. If you would like to share your experience or that of a loved one, please e-mail us your name, photo and story (you can certainly share your story anonymously, too).
14. How can I donate my remains to research specifically related to ependymoma?
Often times a patient may request to donate their remains to their treating medical facility and/or treating medical provider. This can be done by requesting that your treating medical provider order an autopsy. Additionally, there are research organizations that offer this service. Contact us to start this discussion.
15. Are there any new treatments available?
Treatment approaches and options vary based on the individual, prior treatment, and other health issues. Having a discussion with your neuro-oncologist is recommended. Check our website, newsletters and social media pages, where we update regularly with the latest news and research information.
17. Where can I find a support group?
- American Brain Tumor Association has nationwide listing of brain tumor support groups.
- Adult Ependymoma Online Support Group is comprised of survivors, caregivers, family members, friends or anyone else with an interest in ependymoma.
- Ependyparents is a list of parents of ependymoma patients, survivors and angels of brain tumors.
- Myxopapillary Ependymoma Group is a group for patients, parents, grandparents and patient advocates to share treatment information and ideas for children and adults who have myxopapillary ependymoma.
- Pediatric Ependymoma Parents Group is a group for parents and/or primary caregivers of a child that was originally diagnosed with ependymoma under the age of 18.
- Spinal Cord Tumor Association is a caring community on the web, established by survivors, who have been given the overwhelming diagnosis of a spinal cord tumor.
You can find more support by visiting our Resources section on our website. The National Brain Tumor Society has a robust resource section of the website with broader brain tumor and cancer resources.
If we did not answer your question, contact us and we would be happy to help you.