Our Renewed Hope This Holiday Season

Join Us in Advancing our Research Efforts

As we approach the holiday season and the end of 2015, I wanted to reach out to everyone in the ependymoma community and share some important updates and thoughts.

This might surprise some of you, but one of the tasks I look forward to every December is combing through and updating our contact data. This sounds like a menial task, and to some it is, but to me it is the heart and soul of who we are and why we continue pushing forward. These precious lists of names and emails are reminders of all the people who put life into the stories we share. The uplifting moments and the really tough ones are all wrapped up into an email address, how simple it seems on paper. Unfortunately, we all know ependymoma is anything but simple and it will take a collective effort to forge a path for the future.

I am so proud to be a part of the team at the CERN Foundation. This year, we held a CERN gathering at the Society for Neuro-Oncology (SNO) meeting. When I am with these wonderful people I hear discussions about where research is headed, I hear back and forth conversation about the best possible clinical trial design, and I hear about their tireless efforts to keep going. These are some of the brightest and hardest working people I have ever been around and it gives me so much hope and comfort and I want you all to know this too. I want you all to know that there are people out there trying to help our suffering. We call all agree that a cure cannot come fast enough, but we are together continuing the conversation and pushing the envelope towards that goal.

Please consider joining the CERN Foundation in being a part of advancing our mission to improve the care and outcome of people with ependymoma through community support and research efforts.

As you make plans for end of year giving, keep in mind that the CERN Foundation is a non-profit organization and is reliant on the generosity of this community.

Click here to donate.

Looking ahead, we have some exciting projects in place. We plan to lead the ependymoma community with awareness and outreach efforts, launch outcomes work that includes a new Risk Assessment Project, and engage in research support with our first Ependymoma Fellowship. None of these projects could have happened without the generous contributions from this community. I hope that you are all proud of what we have accomplished together and are inspired to do more.

This holiday season we are thankful for all of you and your continued support. I know this time of year is exceptionally difficult for many of you. Below is information that CERN’s very own Alvina Acquaye wrote on coping with the holidays. On behalf of the CERN Foundation, I want all of you to know that we lift you up though the waiting, grieve with those of you dealing with recurrence or loss, and rejoice with those of you who received healing and good news this year.

Sincerely,

Kimberly M Wallgren

Daughter of a 13 year survivor

President of the CERN Foundation

Coping with the Holidays

Alvina Acquaye, MS, LPC – Research Associate for the CERN Foundation

The holiday season is often time of tradition and renewed hope. If you or a loved one has an ependymoma, or if you have lost someone to the disease, the holidays may be more stressful. This can make it hard to feel connected, unable to meet demands, and out of sync with those around you.

The CERN Foundation Outreach Team offers these suggestions to help you cope during the holiday season.

Allow yourself to feel certain emotions: If you want to cry, laugh or be sad embrace when it’s happening. It’s okay you are human.
Find support: Whether it’s family, friends, support groups, a counselor, having support will allow you to have a listening ear to express yourself about any uncertainty or anxiety you may have, without feeling any judgment.
Eat healthy: Have a balanced diet and know your limits. Consume sweets and alcohol in moderation to avoid dips in your energy. Be aware of the foods you can and cannot eat and plan ahead.
Take some of the responsibility off of you: It’s okay to accept help. If you don’t want to cook, maybe have a potluck. If you don’t want the gathering at you house this year, suggest another alternative for family and friends.
Start your own tradition: If you can’t see everyone, Skype or Facetime them, send out personal cards or volunteer do what you can do and want to do, it’s okay to say NO!
Focus on you: Find things that bring you pleasure and help you relax, such as journaling, listening to music, exercising. Think back to activities that you once enjoyed and have since stopped.
Goal setting: Set realistic goals for yourself. Allow yourself to complete the tasks that you can. Reward yourself for what you can do even though you can’t do everything on your list, you are still able to do something productive.
Stop the blaming game: Don’t blame yourself for things out of your control. Be mindful and present and work through things you can control.
Reduce stress: Plan out your trips to remove any anxiety you may feel about any burden you may put on others. You want this time to be as stress free as possible so making arrangements ahead of time reduces that.
Pace yourself: Schedule out your days so you don’t get overwhelmed. Figure out when you have the most energy during the day to pace yourself and work on completing the tasks that are more important during the times when you are able to get more things done. Productive
If you have a loved one that has passed: The holidays can be especially difficult. Celebrate him or her by making a new tradition and if kids are involved, ask for their input on how they want to remember them. Other suggestions include: Writing a letter or journal, writing personal messages on balloons to send off with a group of friends and family, sharing memories and stories about them with each other, or lighting a candle.

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CERN Foundation PO Box 217 | Zionsville, IN 46077 US

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