CERN 2020 Calendar

2020 C A L E N D A R

Mission: The CERN Foundation is committed to improving the care and outcome of people with ependymoma through community support and research efforts.

Picture of ependymoma survivor and pediatric neuro-oncologist, Zsila Sadighi, at the 2019 Ependymoma Awareness Day.

Established in 2006, the CERN Foundation is dedicated to improving the lives of people diagnosed with ependymoma.

Thanks to the efforts of an international network of collaborators, the CERN Foundation has been responsible for the publication of over 50 peer-reviewed papers in leading medical journals. This body of research has greatly advanced our understanding of ependymoma and has left a lasting legacy for future investigators to build upon.

Today, the CERN Foundation continues to increase awareness and research advances of this rare disease. The CERN Foundation provides education resources and referral support to the patient and caregiver community.

The CERN Foundation also provides support to investigators by facilitating meetings and sponsoring scientific fellowships to find better treatment options for those with ependymoma. This relationship allows the CERN Foundation to bridge the gap between the professional and patient and caregiver communities.

The CERN Foundation is grateful to offer all these meaningful outreach programs and support efforts to the ependymoma community. Please consider supporting our efforts and donating to our cause.

cern-foundation.org PO Box 217, Zionsville, IN 46077 • administrator@cern-foundation.org • 844-237-6674

Our Inspiration: Adam and Allie CERN brings two ependymoma survivors together.

“Those of us with ependymoma know that cancer can take so much from our lives, but there is a side of cancer that we often overlook: the gifts of cancer,” says Adam. “It’s odd to say it, but cancer can bring people together – families, friends, communities – to rally around us and support us. This togetherness helps us focus on life, keeping what we have together and giving us the strength to press on. It makes life real and deep, more meaningful than what we may have ever experienced before. The CERN Foundation is a gift, fighting cancer and supporting ependymoma patients in ways we could not do as individuals. In some respects, despite the pain and the uncertainty, cancer can be a gift. Allie and I, and our families and friends, learned the goodness of cancer amongst the pain.”

How They Met

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Adam is from California and Allie is from Kansas. Both were diagnosed with ependymoma, in almost the same spot in the left occipital lobe. Adam was diagnosed in 2014. While recovering in 2015, he wrote a book titled Anchored in the Storm. Subsequently, in 2016, he wrote an article for the CERN website and that’s how Allie and her family discovered Adam.

Allie’s father, Chris, reached out to Adam through Facebook and that’s when the gift of their cancer started. The continued having discussions, questions, and dialogue over the next couple of years. They talked on the phone several times, extending their conversations beyond cancer to life and a life well lived, and the recurrence of Allie’s cancer in 2019.

In one conversation, they talked about how nice it would be to get together. So, they all convened in Texas. They spent a couple hours talking about ependymoma, their lives, and what they have learned through their struggles. Importantly, they simply enjoyed each other’s company. For everyone, meeting was an answer to prayer.

“We met as friends and left as family!”

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“Cancer takes a lot from our lives, but let’s remember that it can also give us great things like expanded friendships, amazing stories to share and a life where we understand its real meaning and purpose,” shares Adam.

New Year’s Day

Start your year off right!

Participate in the Outcomes and Risk Project.

Martin Luther King Jr. Day

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CERN Foundation Collaboration National Cancer Institute (NCI) The CERN Foundation is excited to announce it has partnered with NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) to facilitate engagement with adult patients with rare central nervous system (CNS) tumors, including ependymoma.

NCI-CONNECT is led by CERN advisors, Drs. Mark Gilbert and Terri Armstrong, Chief and Deputy Chief of the Neuro-Oncology Branch at NCI, who have been involved with the CERN Foundation since inception. Together, we have made tremendous progress in understanding ependymoma.

How adult patients can participate: Complete the online Outcomes and Risk Study to help researchers learn why rare tumors develop and the impact.

Visit the NCI-CONNECT Clinic at the National Institutes of Health (NIH) to meet others with ependymoma and receive special services. First visit services include: •

A review of your diagnosis. The team will evaluate your tumor tissue prior to your first visit to confirm your tumor type. They will also look for gene changes that could cause cancer and help treat it.

•

Consultations with an expert healthcare team. These include: •

Group meetings with a health and wellness expert. You will learn coping and wellness techniques and meet others with your same diagnosis.

•

Personalized meeting with a genetic counselor to determine if you or your family are at risk for developing cancer.

•

Meeting with an expert healthcare team to answer questions about your diagnosis and discuss treatment and clinical trial options.

Learn more at

cancer.gov/nci-connect

Partnering to improve care and treatments for people living with rare brain and spine tumors.

Picture of Dr. Marta Penas-Prado, NCI Neuro-oncologist.

Groundhog Day

Spread the love!

Send some encouraging words to someone who needs them.

Presidents’ Day

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Valentine’s Day

Our Inspiration: Katrina As an ependymoma survivor for 30 years, Katrina shares how her ependymoma changed her life.

In 1989, 12-year-old Katrina threw up first thing in the morning once a week for about five months. Afterwards, she felt fine. Her pediatrician ordered a CT scan and discovered a brain tumor. Her parents took her to a local cancer hospital. She was told she had an ependymoma, and probably a grade II. A pediatric neurosurgeon performed the surgery to remove the tumor, which was located at the base of her brain. “Mom says I was out of the hospital in about six days. I just remember the doctors promising to get me home in time to watch the New York Giants play in the World Series with my dad,” says Katrina. After two weeks of recovery, she started seven weeks of radiation therapy.

“Now, I have a college degree. I’ve traveled the world and married a wonderful man! Totally worth it all to have lived my life! Everyone has something negative that will happen to them,” says Katrina.

“Push through and do your best to get over it.

Let it pass because that’s about all you can do to get it over with.”

ed Katrina pictur

For years, she wanted to meet other ependymoma survivors. She attended the Ependymoma Awareness Day butterfly release and Head to the Hill events last May. “Before I went, I had only met two people in all my life who also had ependymoma before I went. I met two more at this event! It added to not feeling alone!” Over 300 attendees released butterflies for Ependymoma Awareness Day. “For me, it was calming, just letting ependymoma go,” says Katrina.

. at her wedding

“Live your life!”

Katrina visiting Cabo

San Lucas, Mexico.

Head to the Hill was exciting and scary at the same time for Katrina, as this was her first year. “We had people from 30-something states, each of which met with their senator’s staff members and asked for more funding for medical research. I am absolutely going next year and I encourage anyone from the ependymoma community to go!”

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Daylight Saving

St. Patrick’s Day

First Day of Spring Stop and smell the roses!

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CERN Foundation Projects

The CERN Foundation is a resource for patients, families and caregivers dealing with ependymoma.

Ependymoma Education

We have assembled useful information on ependymoma, treatment options, caring for yourself or your loved one and more.

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If you or a loved one has just been diagnosed or have been living with the disease for many years, you probably have lots of questions. We can help you get the facts on ependymoma.

FREE Ependymoma Guide The CERN Foundation has developed an Ependymoma Guide as a resource for patients, caregivers and advocates. The goal of the guide is to provide you with the basic facts surrounding ependymoma, its diagnosis and treatment. If you would like a copy of the guide mailed to you, please email administrator@cern-foundation.org or simply visit the CERN Foundation website to download a pdf copy.

Website The CERN Foundation’s website, cern-foundation.org, is a comprehensive resource on ependymoma for patients and caregivers, as well as medical professionals.

The site contains a wide range of information on ependymoma including: • • • • • •

Ependymoma Basics Diagnosis Treatment Options Recurrence Symptom Management and Support Resources

Please visit the website often as it’s regularly updated with important information on new research, symptom management and the latest news from the CERN Foundation.

Visit our website at

cern-foundation.org

April Fool’s

Plan an Ependymoma Awareness event near you!

Passover

Easter

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Earth Day

Good Friday

Learn more about Awareness Day

CERN Foundation Projects

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Ependymoma Awareness Day Ependymoma survivor, Ian, gave these remarks at the 2019 Ependymoma Awareness Day.

My parents didn’t sleep at all. I lost my hearing and one vocal cord that day.

I am a son. I am a brother. I am a dreamer. I am a fighter.

I am a Spartan. I am an ependymoma survivor,

Ian shares photos of him in the hospital and recovery.

These were days I’m glad I don’t remember. They make me cry because I see my family cry when they talk about it. You see cancer doesn’t just affect me, it affects my whole family and everyone who loves me. It still does. You can’t erase it. Just ask my brother and sister.

But most of all, I am Ian! I didn’t choose cancer, it chose me. But I do know I am going to move mountains because of it.

I don’t remember the day they discovered my brain tumor, but my mom says it’s a day she will never forget.

It was Mother’s Day and I was only 15 months old. My surgery began. I died for a moment, but as you can see...

I fought back. I had a bigger plan of my own.

Ian shares photos of him with his family. These are days I never want to forget! This is my awesome life beyond cancer the way it should be! I have the best job, the best friends, and the best family!

I didn’t choose cancer, but I did choose to beat it!

My doctors say things like, “We hit a home run with this one!“ and “He’s a medical wonder.“

In closing, I just want to give others HOPE that there are good days to come. Fight for them.

I think I’m just me, Ian, the kid with nice hair that likes peanut butter just about any way. I didn’t choose ependymoma, it chose me.

Go green! #BECAUSEOFIAN

I didn’t choose to lose 17 months of my childhood to hang out at hospitals with IV drips, harmful drugs with awful side effects, horrible port infections, and a feeding tube! I didn’t want to miss playing at the park or my own birthday party. Cancer chose that for me.

Ian shares a photo of him when he was 15-months-old.

This was me the day I didn’t feel good. My head hurt really bad, but I was too young to tell anyone. No one thought cancer. Not even the emergency doctor the first time. Good thing my parents knew to ask another doctor!

Ian shares a photo of him after surgery. Here was the day we hit the home run. I slept through the whole 22 hours.

Hundreds of butterflies are released each year to honor loved ones with ependymoma, caregivers, and to support ependymoma research.

Picture of ependymoma survivor, Ian, at the 2019 Ependymoma Awareness Day.

Brain Tumor Awareness Month

Ependymoma Awareness Day Join us in Washington D.C. for our butterfly release!

Join the National Brain Tumor Society at Head to the Hill!

Cinco de Mayo

Mother’s Day

Memorial Day

In honor of OUR HERO Thomas Reynolds.

Happy Birthday baby!

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Share information with others about ependymoma to increase awareness!

Our Inspiration: Amy Amy shares how her ependymoma was discovered and removed from her spine, and how she paid it forward.

During an ice storm, Amy slipped and fell hard on her lower back causing severe pain on the right side of her back and hip that radiated down her right leg. After multiple tests, she discovered a tumor on her spinal cord the size of a grape that was pressing on her nerves. “It was located between lumbar 1 and 2 and I was lucky that I had not already experienced any permanent paralysis or loss of bladder or bowel control based on where it was located,” says Amy. Her surgery was successful and the surgeon was able to completely remove the tumor. “My recovery went well considering the intensity of having my backbone sawed through to reach the spinal cord and that I had to lay flat for several days following,” shares Amy.

Amy with her

husband.

At a follow-up visit, she learned her tumor was a grade II e ​ pendymoma.

She met with a neuro-oncologist to review her case and for recommendations on further treatment. She had 30 days of radiation concentrated in the area of where the tumor was removed. She now remains cancer free after ten years. “I was diagnosed at age 49 and will be turning 60 later this year. I know I have been very blessed to be a cancer survivor with few side effects,” says Amy. Amy never wanted to share her story before because she felt like she never really suffered like most cancer patients. “Ependymomas are rare but deserve attention and awareness as well. I am thankful for the CERN Foundation and their efforts to research this type of cancer and help others and myself better understand this disease.”

“I participated in the Outcomes and Risk Study last year and hope that my DNA and experience can help someone in the future.”

First Day of Summer Find time to spend quality time with your family!

Father’s Day

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CERN Foundation Projects Referrals The CERN Foundation wants to help you find an expert neuro-oncologist who specializes in treating ependymoma. CERN routinely connects patients and families with institutions and physicians that specialize in treating ependymoma. CERN also makes connections between treating physicians and CERN representatives. Contact us at administrator@cern-foundation.org for more referral information.

We encourage all ependymoma patients to seek a medical opinion with neuro-oncologists that have experience with this disease.

Picture of CERN Advisor, Dr. Amar Gajjar, Neuro-oncologist at St. Jude Children’s Research Hospital.

Independence Day

Want to learn more about ependymoma?

Check out our Ependymoma Guide!

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CERN Foundation Projects

Ependymoma Research Fellowship Kristian Pajtler, MD, pediatric neuro-oncology clinical fellow at the University Hospital Heidelberg in Germany, is the recipient of the 2018 CERN Foundation Scientific Ependymoma Fellowship. Dr. Pajtler received the competitive award in late 2018, which provides $50,000 for two years, and he’s already made strides in his research.

To better understand ependymoma, Dr. Pajtler is studying its molecular data and classifying it. He has made important discoveries that could lead to the development of more effective therapeutic approaches. “We are identifying molecular alterations and mechanisms that drive the disease. Ideally, treatment strategies are based on a known mechanism of action, such as targeting a tumor-specific molecular alteration,” says Dr. Pajtler.

“The CERN Foundation Fellowship has allowed me to dedicate research time to ependymoma only. I was able to focus on urgent questions and finish important ependymoma projects,” says Dr. Pajtler. He has published several original papers during the funding period with more to come. He also acknowledges that his recent discoveries have been made possible because of invaluable collaborations with investigators in the CERN Foundation network.

“These collaborations have motivated me to move the field forward, but have also helped me gain additional insights to the challenges associated with ependymoma,” says Dr. Pajtler.

Using Molecular Data to Understand Ependymomas In May 2015, Dr. Pajtler made what he considers his most important contribution to the field. In a joint approach with international cooperation partners, he developed the novel molecular classification of ependymoma that helped researchers better understand the underlying biology of the disease.

“Our molecular classification is unbiased, robust and uniform. It adequately reflects the full biological, clinical and histopathological heterogeneity across all age groups, grades and major anatomical CNS compartments,” says Dr. Pajtler.

The researchers used DNA methylation profiling to identify nine molecular subgroups in a large cohort of 500 tumors. Notably, they identified more subtle oncogenic mechanisms (genetic changes that have the potential to cause cancer) in aggressive posterior fossa ependymoma.

Based on these findings, in August 2018, Dr. Pajtler and collaborators discovered that an uncharacterized gene, CXorf67 (now called EZHIP), has a functional role in posterior fossa type A (PFA) ependymomas. “The gene drives histone hypomethylation in PFA tumors by mimicking K27M mutated histones, which is a known oncogenic mechanism in an aggressive brain stem tumor called diffuse intrinsic pontine glioma,” explains Dr. Pajtler.

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Further using molecular classification, in August 2019, Dr. Pajtler reported a novel molecular group of spinal ependymoma with MYCN amplification and plans to establish it as a new molecular subgroup in ependymoma.

Translating Findings into Effective Therapies “Within the last few years, we have gained substantial insights into ependymoma biology and increased our understanding about essential oncogenic dependencies or single molecular alterations,” says Dr. Pajtler. Yet, despite significant findings, researchers still do not have promising targets or compounds to target known alterations.

For example, disruption of the interaction between CXorf67 or EZHIP and EZH2 may serve as a novel targeted therapy for aggressive PFA tumors. “This knowledge can now be paired with our fully characterized and representative models in order to preclinically evaluate potential treatment approaches and get prepared for early phase clinical trials” says Dr. Pajtler.

“An improvement in therapy for ependymoma is urgently needed,” says Dr. Pajtler.

“We are currently integrating all molecular information that we have gained within the recent years to evaluate the most promising therapy approaches to be tested in our new models.” He also plans to focus his research on identifying relevant downstream mechanisms of ependymoma that may be better accessible for novel therapeutic approaches.

Connect with others affected by ependymoma by following us on Facebook and Twitter!

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Our Inspiration: Tamiko Mother shares the knowledge she acquired while caring for her son, Colin, to help other parents navigate through their journey.

Tamiko’s son was diagnosed with an anaplastic ependymoma in 2009 at age two. Like most parents, she and her husband, Ian, did not know what to do. They began researching about his tumor to provide the best care for their son.

“He had a poor prognosis from the beginning. We were fortunate that we carved a path for Colin to get appropriate treatment, but we wouldn’t have known that path existed if I hadn’t sought out a clinical trial that I read about that wasn’t available where we were at the time,” says Tamiko.

“I constantly asked the team questions about medications that were being used, strategies for dealing with side effects, and even the rationale for the trial design,” shares Tamiko. “These questions came not from my desire to replace the medical team but to be an active participant and to make sure that I was meeting my responsibilities as a parent.”

In the intervening years, she became a moderator for a pediatric ependymoma parents Facebook group. She created a database of trials and other information about ependymoma and helps guide parents through options. “Many families have just stepped across the threshold of a cancer diagnosis and are likely overwhelmed with even the basic knowledge they need to acquire to understand what is happening with their children.”

Colin with his

mom, Tamiko.

Despite five years of remission, Colin’s ependymoma returned and he died a few months short of his eleventh birthday in 2018. “While I can no longer advocate for him, I can help other families. We were extremely lucky to have many wonderful years with our son, who lived a deeply fulfilling life,” Tamiko says.

“I help parents get the support they need.”

Helping other people was one of Colin’s core beliefs and he made a huge difference in the world. “The least I can do is to continue Colin’s legacy and help those around me to the best of my abilities,” says Tamiko. “After investing so much energy into learning about ependymoma, it would not feel right to turn my back on a community that is constantly growing and is always looking for support.”

Childhood Cancer Awareness Month

Labor Day

First Day of Fall A new season, a fresh start!

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Share information with others about childhood cancer to increase awareness!

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Yo soy Ilia Díaz Ñeco. Soy puertorriqueña y tengo 33 años. Tengo 2 niños . El mayor es autista de 18 años y mi otro nene tiene 12.

En el 2013 mientras hacía ejercicio me empezó un fuerte dolor de espalda. Fui al médico y me dieron pastillas y se me alivió el dolor.

En septiembre del 2014 me volvió el dolor. Volví al médico pero las pastillas no me ayudaban con el dolor. El médico me decia que era el nervio ciático. Me llegaron a dar terapias pero era peor, hasta que la fisiatra me envió hacer un MRI ya que mis piernas se hinchaban y casi no podía ir al baño. En el 2015 me encontraron el tumor en la espina. Me operaron pero me tuvieron que cortar un nervio para sacarmelo por completo. Hasta el dia de hoy sigo en seguimiento.

Gracias a Dios estoy de pie.

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My name is Ilia Díaz Ñeco and I am 33 years old. I am from Puerto Rico and have 2 children. The oldest is 18 years old and autistic.

My other child is 12 years old. In 2013, while I was exercising, I started having severe backache. I went to the doctor who gave me pain medication which relieved the pain. In September 2014, the pain returned. I went back to the doctor, but the pain medication no longer helped me. They told me it was caused by the sciatic nerve. I began therapy and the pain worsened. The physiatrist sent me to have an MRI since my legs were swollen and I could hardly go to the bathroom. In 2015, they found a tumor in my spine. They operated but had to cut my nerve to remove it all. Up to now, I still have follow-ups. Thank God, I’m still on my feet! #ourinspiration

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CERN Foundation Projects Ependymoma Outreach The CERN Foundation is helping anyone affected by ependymoma connect with the foundation and, perhaps most importantly, each other. < These posts were featured on our Facebook page.

Stay informed!

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Follow us on Facebook and Twitter!

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Sign up for e-news at cern-foundation.org/get-involved-cern-newsletter

Happy Birthday Conner!

Love Mom and Dad

Support the CERN Foundation!

Create your own online fundraising campaign!

Columbus Day

Halloween

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Bringing together experts to determine areas of research for ependymoma and make progress in patient outcomes.

Picture of Dr. Vijay Ramaswamy, Neuro-oncologist at the Hospital of Sick Children and recipient of the 2015 CERN Basic Science Fellowship.

CERN Foundation Collaboration Ependymoma Meeting

The CERN Foundation attended the Fourth Biennial Ependymoma Consensus held at National Institutes of Health (NIH) on February 20 to 22, 2019. Neuro-oncology experts worldwide met to advance their knowledge and collaborate to find better treatments for people with ependymoma.

The consensus was co-led by CERN Advisors, Drs. Kenneth Aldape, Mark Gilbert, and Terri Armstrong of NIH. In its history, the Ependymoma Consensus has helped define areas of research for ependymoma and advance therapies for patients. Importantly, the consensus is an international collaboration. Participants recognize the complexity of ependymoma and the need to work together to understand tumor genetics and molecular characteristics to advance treatments.

During the 2019 consensus, participants presented the latest research and advances in the field. Then, they gathered in three working groups to discuss preclinical models, the pathology and molecular classification of tumors, and to discuss clinical trial designs.

“It was exciting to bring world leaders in the field of ependymoma together to highlight the pressing problems and develop strategies to collectively and effectively address these problems in ways that can lead to improved patient outcomes,” says Dr. Aldape.

Participants also discussed a global effort to sort the various subtypes of ependymoma, and how to define and treat the various subtypes, and the state of genetic testing. “We are gaining new insight into ependymoma subtypes, which we believe will improve our ability to treat ependymoma and provide valuable and meaningful care to patients,” says Dr. Armstrong.

Recognizing the challenges in rare cancer studies, the attendees discussed the design of clinical trials, which are critical to developing new therapies. “Additionally, researchers and clinicians highlighted the importance of molecular and genetic testing to design targeted trials and the need to develop trials for patients whose tumor has recurred after the initial treatment,” says Dr. Gilbert.

Daylight Saving

Veterans Day

Share your story with us, giving inspiration to others going through similar experiences!

Thanksgiving

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Support the CERN Foundation As you plan for the new year, consider getting involved and giving back to the CERN Foundation! With your generous support, we will continue to improve the care and outcome of people with ependymoma.

Pictured are individuals from the ependymoma community that have created their own events and activities to help support the CERN Foundation. ndraiser at a , Nicole, holds fu

Tyler’s girlfriend

You, too, can get involved by donating or by creating your own fundraising campaign or event. You could participate in a local run, hold a bake sale, create a lemonade stand, hold an event at a local restaurant or bar, have a butterfly release, or sell t-shirts or bracelets. Be creative!

Contact us to help you with your fundraiser: administrator@cern-foundation.org.

local bar.

Wenger family dedicates bench and contributes to CERN.

Hotchkiss Insurance holds “no shave” contest fundraiser.

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her son, Aaron.

Hanukkah

First Day of Winter

Christmas

Snuggle up with those close to you!

New Year’s Eve Donate to the CERN Foundation for your year-end donations!

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Kwanzaa

Thank you to these generous sponsors who have contributed to the 2020 CERN Foundation calendar.

For the caregivers who provide love and support.

From a grateful parent.

To the world’s greatest fighter, Thomas Reynolds, who lived his life with love and compassion.

From a grateful parent.

We love you forever! #livethedash #livelikethomas

For the caregivers who provide love and support.

cern-foundation.org PO Box 217, Zionsville, IN 46077 • administrator@cern-foundation.org • 844-237-6674