May 2023 Newsletter
— Posted May 31, 2023
Watch all events that took place on Ependymoma Awareness Day, including footage from the Head to the Hill Welcome Reception and CERN Butterfly Release Ceremony in Bethesda, Maryland, as well as video updates from ependymoma scientists Kendra Maass and Dr. Sriram Venneti. In this newsletter, we also recap the Ependymoma Awareness Day — Virtual Community Gathering and shared information on other virtual support services through National Brain Tumor Society.
April 2023 Newsletter
— Posted April 26, 2023
In April, we featured Tiffany's story - a mom to seven who's days were spent homeschooling her kids, taking kids to extracurricular activities, doing projects, and visiting friends. All of a sudden, life changed completely with an ependymoma diagnosis. Read her story and learn how you can get involved for Ependymoma Awareness Day this year.
March 2023 Newsletter
— Posted March 31, 2023
In March, the CERN Foundation invited the community to sign up for a Virtual Community Gathering happening on Ependymoma Awareness Day, and a butterfly release happening during the Head to the Hill Welcome Reception on May 8. These are just a couple of many ways you can get involved this year for Ependymoma Awareness Day.
February 2023 Newsletter
— Posted February 22, 2023
This month, the CERN Foundation - along with patients, care partners and medical professionals from around the world - dedicated May 10, 2023, as the 12th annual international Ependymoma Awareness Day!We shared the ways to get involved along with other important events happening during brain tumor awareness month (BTAM).
January 2023 Newsletter
— Posted January 25, 2023
This month, the CERN Foundation kicks off the new year with a collection of resources and inspirational stories from the community blog. The stories help to articulate the unique perspective of dealing with an ependymoma diagnosis and offer tips, insight, or support.
December 2022 Newsletter
— Posted December 28, 2022
Before turning the page to 2023, the CERN Foundation released Ependymoma Essentials - Episode 3: An Update on the ACNS0831 Clinical Trial. A 2022 year-end report was also shared, including a message from CERN and highlights the projects and programs made possible because of volunteers, survivors, care partners, and donors like you.
November 2022 Newsletter
— Posted November 30, 2022
In November, the CERN Foundation featured a story about Jenna, who received her ependymoma diagnosis while she was pregnant during COVID-19. She shares how she navigated care during the lockdown and the concerns she had for her entire family. We also invited the community to download a free printable butterfly gift tag or ornament that can be personalized and shared with loved ones.
October 2022 Newsletter
— Posted October 26, 2022
Radiation treatment can be recommended for patients with ependymoma, but it can be scary and present challenges and concerns that are important to discuss with your medical team. In October, we asked the ependymoma community to share useful tips for people starting radiation treatment and received good feedback from survivors, parents, and care partners. Read this month's newsletter to see what they had to say.
September 2022 Newsletter
— Posted September 28, 2022
In September, Ependymoma survivor Savannah shares her honest account on what it's like to be a young adult navigating a brain tumor diagnosis, treatment, and survivorship. Also, during Childhood Cancer Awareness Month, we launched a new giving page to make your support even easier.
August 2022 Newsletter
— Posted August 31, 2022
In August, the CERN Foundation shared the great news that discoveries from the 2020 CERN Robert Connor Dawes Pediatric Fellowship were pivotal in launching a brand new $3M ependymoma research project. Learn more about this and other news in survivorship care and new advocacy efforts in this month’s newsletter.
July 2022 Newsletter
— Posted July 27, 2022
This July, we were pleased to bring you a brand new community guest blog post - Intimacy and a Brain or Spinal Cord Tumor Diagnosis by Matt Cotcher. A topic that patients and doctors tend to avoid, Matt addresses it head on as an important part of 'quality of life'. Read this, along with new fast facts about ependymoma and Central Nervous System Tumors from the World Health Organization (WHO), and learn how you can plan your own community event.
June 2022 Newsletter
— Posted June 29, 2022
This month, CERN released the second episode of Ependymoma Essentials. Featuring Dr. Torunn Yock and Tamiko Toland, watch their discussion as they focus on radiation therapy for pediatric ependymoma.
May 2022 Newsletter
— Posted May 31, 2022
The CERN Foundation and the National Brain Tumor Society commemorated the 2022 Ependymoma Awareness Day during Brain Tumor Awareness Month which included a great virtual event which is now currently available to watch. We ended the awareness month by publishing the 2022 Ependymoma Awareness Outreach Report which included a book launch, and a proclamation signing by Kansas Governor Laura Kelly.
April 2022 Newsletter
— Posted April 26, 2022
In this year's April newsletter, the CERN Foundation shares ways you can commemorate the 2022 Ependymoma Awareness Day! With options that range from in-person events, to virtual ways you can share your stories and get involved from a distance, we have a number of ways you can show your support.
March 2022 Newsletter
— Posted March 30, 2022
This March, the CERN Foundation announced the commemoration of Ependymoma Awareness Day with a live streamed virtual event that will take place on May 10, 2022 at 1PM EDT on the CERN website and Facebook Live. The program will feature awareness content, stories from the ependymoma community, and conclude with a butterfly release. Learn more about Ependymoma Awareness Day activities and read an inspiration story from Tiffany, who was 17 years old when she was diagnosed with an anaplastic ependymoma tumor in her brain.
February 2022 Newsletter
— Posted February 23, 2022
This February, the CERN Foundation, with Patients, care partners and medical professionals from around the world, dedicated May 10, 2022 as the 11th annual Ependymoma Awareness Day! We shared the ways to get involved along with other important events happeing during brain tumor awareness month (BTAM).
January 2022 Newsletter
— Posted January 26, 2022
To start off the new year, the CERN Foundation announced the fellowship recipient, Kendra Maass, shared a story from Pierre about his ependymoma journey, and a community blog post from ependymoma survivor, Matt Cotcher.
December 2021 Newsletter
— Posted December 29, 2021
This month, the CERN Foundation unveiled Ependymoma Essentials, a new educational video series for Ependymoma patients and care partners that shares reliable and trustworthy information in collaboration with leaders in the ependymoma community.
November 2021 Newsletter
— Posted November 24, 2021
In November, the CERN Foundation featured Lisa's story about the focus and strength of her young adult daughter's fight with spinal ependymoma. We shared Dr. Chan Chung’s fellowship work on Metformin, and the news that NBTS advocacy culminated $6M in government funding to develop treatments targeting fusion found in 70% of supratentorial ependymomas.
October 2021 Newsletter
— Posted October 27, 2021
This month, learn about the collaborative effort between ependymoma advocacy groups across the world that was organized in order to prioritize and articulate the unique key issues facing the ependymoma community - Education and Awareness, Clinical Coordination, Transparency, and Survivorship and Support.
September 2021 Newsletter
— Posted September 29, 2021
Ependymoma caregiver, Tamiko, shares insight into the different reactions from the pediatric cancer community during Childhood Cancer Awareness Month and offers words of wisdom to the brain tumor community. Also, check out the amazing story about Eva DeLotto and the inspiration behind the Mobile Primary Golf Tournament.
August 2021 Newsletter
— Posted August 25, 2021
This month's newsletter is all about the importance of ependymoma patients seeking a second opinion. We shared resources to help find expert neuro-oncology teams that specializes in treating ependymoma, along with a video from Dr. Zsila Sadighi, Pediatric Neuro-Oncologist at MD Anderson Cancer Center. We also feature Dawn's story about her recovery from a surgery that removed a spinal cord tumor located in what doctors refer to as "a high real estate area" of her spine.
July 2021 Newsletter
— Posted July 29, 2021
In July, the CERN Foundation covered the latest updates from the 2021 World Health Organization (WHO) Classification of Tumors of the Central Nervous System update published in Neuro-Oncology. We also covered new findings from a clinical trial regarding oral drug combinations from NCI-CONNECT, and shared a new video from National Brain Tumor Society's Informed in 30: Neurosurgical Techniques.
June 2021 Newsletter
— Posted June 30, 2021
Featured in this month's newsletter, ependymoma survivor, Jennifer, shared her story and the importance of internal awareness. Also in June, the CERN Foundation and the National Brain Tumor Society were proud participants in the Survivorship Care in Neuro-Oncology Symposium, and PNOC doctors release a 2021 Ependymoma Informational Webinar.
May 2021 Newsletter
— Posted May 26, 2021
Alongside thousands of supporters from all over the world, we commemorated the 2021 Ependymoma Awareness Day event with a virtual program that included educational and awareness content from CERN Advisors and Members, historical clips from previous EAD events, key issues from the ependymoma community, and concluded with a butterfly release. Check out the highlights in this month's newsletter.
April 2021 Newsletter
— Posted April 28, 2021
In this year's April newsletter, the CERN Foundation unveils information about the 30+ minute program which will commemorate Ependymoma Awareness Day on May 10, along with activities people of all ages can do in order to support the 10th annual Ependymoma Awareness Day.
March 2021 Newsletter
— Posted April 27, 2021
Now in its 10th year, 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, announced the designation of May 10, 2021 as Ependymoma Awareness Day. The March newsletter shared a number of ways to get involved and help support, empower, and amplify the voice of the brain tumor community.
February 2021 Newsletter
— Posted February 24, 2021
This February, the CERN Foundation, with patients, care partners and medical professionals from around the world, have dedicated May 10, 2021 as the 10th annual Ependymoma Awareness Day! Learn more about all the ways you can get involved. Also featured is a Scientific Spotlight on Dr. Eric Holland.
January 2021 Newsletter
— Posted January 27, 2021
Our first newsletter of 2021 features a story from community blogger Adam Holland, a high school history teacher and writer who was diagnosed with a brain tumor in 2014 that was later diagnosed as ependymoma. Read his story and get new tips from NCI-CONNECT on managing self-care after being affected by a brain or spine tumor.
December 2020 Newsletter
— Posted December 23, 2020
The CERN Foundation supported a phase II clinical trial, CERN 08-02, for adults with recurrent ependymoma. Learn more about this groundbreaking work. Also, meet Dallas, who touches on the importance of partnering with your medical team to find the best care.
November 2020 Newsletter
— Posted November 25, 2020
Our November newsletter features a virtual SNO meeting and community focused video on Understanding Rare Brain and Spine Tumor Research and Treatments. Also included are new videos from the NCI offering guidance on managing a child's cancer diagnosis.
October 2020 Newsletter
— Posted October 28, 2020
After Beth discovered a tumor in the center of her spinal cord, she had a number of decisions to make. Learn how she found expert care, support, and resources to prepare her for surgery in October's newsletter.
September 2020 Newsletter
— Posted October 26, 2020
Our September newsletter invites you to watch a recorded event on cIMPACT-NOW: Advancing the Molecular Classification of Ependymal Tumors. Also included are ways to get involved for Childhood Cancer Awareness Month, and a story about 4-year-old Dontrell who's smile is simply contagious.
August 2020 Newsletter
— Posted September 18, 2020
Our August newsletter includes news and educational event on cIMPACT-NOW: advancing the molecular classification of ependymal tumors. It shares news about Childhood Cancer Awareness Month and an inspirational story from Jill on pressing forward after her ependymoma diagnosis.
July 2020 Newsletter
— Posted July 31, 2020
View our July newsletter featuring an inspirational story from Sean, who shares his diagnosis, recovery, and survivorship of ependymoma in his own words. Also included is new findings and progress in Ependymoma research.
June 2020 Newsletter
— Posted July 29, 2020
View our June newsletter featuring a recap of Ependymoma Awareness Day activities, including images and video from our community, along with resources on ways to stay healthy and up to date on the coronavirus (COVID-19).
May 2020 Newsletter
— Posted May 13, 2020
View our May newsletter, including our virtual Ependymoma Awareness Day activities and video.
April 2020 Newsletter
— Posted April 15, 2020
View our April newsletter, encouraging the ependymoma community to participate in Ependymoma Awareness Day activites from home.
March 2020 Newsletter
— Posted March 31, 2020
View our March newsletter featuring Carol Kruchko and Jill Barnholtz-Sloan on sharing new ependymoma data to improve survival, the impact of the coronavirus on our community, Tamiko shares how to navigate the internet when searching for disease information and Samarrah's inspirational story.
February 2020 Newsletter
— Posted February 25, 2020
View our February newsletter announcing Ependymoma Awareness Day - May 3, 2020 and ways you can get involved.
January 2020 Newsletter
— Posted January 29, 2020
View our January newsletter featuring a video by David Arons and the importance of collaboration, Matt shares how to utilize resources the medical system makes available and Jeff's inspirational story.
December 2019 Newsletter
— Posted December 27, 2019
View our December newsletter featuring our end of the year report from Kim Wallgren, President of the CERN Foundation.
November 2019 Newsletter
— Posted November 19, 2019
View our November newsletter on how you can support the CERN Foundation, published research supported by CERN to further understand ependymoma, and Sarah shares tips to help guide you through your journey.
October 2019 Newsletter
— Posted October 23, 2019
View our October newsletter featuring an article by Dr. Kristian Pajtler and his ependymoma research studying molecular data and classifying it, a featured video with Doris encouraging ependymoma patients and caregivers to advocate for their care, and Jennifer shares ways to cope with scans.
September 2019 Newsletter
— Posted September 24, 2019
View our September newsletter highlighting Childhood Cancer Awareness Month and a few ependymoma parents who share their knowledge to help other families and how you can take action to fund pediatric research.
August 2019 Newsletter
— Posted August 27, 2019
View our August newsletter featuring a video with Dr. Zsila Sadighi encouraging ependymoma patients to seek a medical opinion with neuro-oncologists and neurosurgeons that have experience with this disease and the announcement of a new blog series written by members of the ependymoma community.
July 2019 Newsletter
— Posted July 22, 2019
View our July newsletter featuring an article about the NCI-CONNECT meeting held at NIH to discuss central nervous system tumor clinical studies, how the CERN Foundation brought two ependymoma survivors together, and Amy's inspirational story.
June 2019 Newsletter
— Posted June 28, 2019
View our June newsletter featuring an article by Dr. Vijay Ramaswamy, who shares discoveries he has made to help develop therapies for children with ependymoma, how you can join a new virtual support group, and Katy's inspirational story.
May 2019 Newsletter
— Posted May 31, 2019
View our May newsletter, including presentations from Ependymoma Awareness Day and ways the ependymoma community got involved on a local level.
April 2019 Newsletter
— Posted April 9, 2019
View our April newsletter, encouraging the ependymoma community to participate in Ependymoma Awareness Day.
March 2019 Newsletter
— Posted March 28, 2019
View our March newsletter featuring an article by Dr. Mark Gilbert, as he reports on clinical trials and advances in care for those with ependymoma, a summary of the Fourth Biennial Ependymoma Consensus that was held at NIH, and Kimberly Wallgren shares how her father’s cancer inspired the creation of the CERN Foundation.
February 2019 Newsletter
— Posted February 7, 2019
View our February newsletter announcing Ependymoma Awareness Day - May 5, 2019 and ways you can get involved.
January 2019 Newsletter
— Posted January 22, 2019
View our January newsletter featuring a video with CERN advisor, Dr. Terri Armstrong, about our focus on understanding outcomes for patients with ependymoma, CERN supported research studies shared at SNO, and Ian's inspirational story.
December 2018 Newsletter
— Posted December 12, 2018
View our December newsletter featuring our end of the year report from Kim Wallgren, President of the CERN Foundation, and Gabrielle's inspirational story.
November 2018 Newsletter
— Posted November 20, 2018
View our November newsletter on how you can support the CERN Foundation.
October 2018 Newsletter
— Posted October 26, 2018
View our October newsletter featuring a video with CERN advisor, Dr. Mark Gilbert, about our collaborative approach to investigating ependymoma and Kristina's inspirational story.
September 2018 Newsletter
— Posted September 24, 2018
View our September newsletter highlighting Childhood Cancer Awareness Month and a few people who have made a positive impact for our ependykids.
August 2018 Newsletter
— Posted August 30, 2018
View our August newsletter featuring an article by Claire King, Ph.D., on investigating the genetic fusion that drives supratentorial ependymoma, Sarah's speech at the 2018 Ependymoma Awareness Day, and Steven's inspirational story.
July 2018 Newsletter
— Posted July 23, 2018
View our July newsletter announcing the CERN Foundation's partnership with the National Institutes of Health to facilitate engagement with patients with rare CNS tumors, a recently published article profiling posterior fossa ependymoma and how the Southern Sassenachs are fundraising to support CERN.
June 2018 Newsletter
— Posted June 29, 2018
View our June newsletter featuring the third video released in a series of short films – People of CERN: Matilda’s Story.
May 2018 Newsletter
— Posted May 9, 2018
View our May newsletter that includes a video from our 2018 Ependymoma Awareness Day butterfly release, held on Sunday, May 6, 2018 in Washington, DC.
April 2018 Newsletter
— Posted April 27, 2018
View our April newsletter featuring an article by Glenn Lesser, M.D., on discovering new therapies for brain tumors, Shannon's inspirational story and Ependymoma Awareness Day.
March 2018 Newsletter
— Posted March 29, 2018
View our March newsletter announcing Ependymoma Awareness Day - May 6, 2018 and ways you can get involved.
February 2018 Newsletter
— Posted February 27, 2018
View our February newsletter announcing two distinguished scientific fellowship awards and an article by Sriram Venneti, Ph.D., on investigating the mechanisms that drive childhood brain tumors like ependymoma.
January 2018 Newsletter
— Posted January 23, 2018
View our January newsletter featuring an article by Stefan Pfister, M.D., on investigating molecular profiles of ependymoma in hopes of developing novel treatments for patients and a published article on therapeutic targeting of ependymoma by oncogenic enhancer profiling.
December 2017 Newsletter
— Posted December 27, 2017
View our December newsletter featuring a published article on the recent advances in the classification and treatment of ependymomas and Sofia's inspirational story.
November 2017 Newsletter
— Posted November 28, 2017
View our November newsletter encouraging you to support our efforts. With a donation of $35 or more, you will receive our 2018 CERN Foundation calendar.
October 2017 Newsletter
— Posted October 31, 2017
View our October newsletter featuring an article by Michael Scheurer, Ph.D., on investigating the risk factors of ependymoma in the new risk project and Prashant's inspirational story.
September 2017 Newsletter
— Posted September 28, 2017
View our September newsletter featuring an article by David Arons, Chief Executive Officer of the National Brain Tumor Society, and how advocacy and public policy are helping give the brain tumor community a voice and Sarah's inspirational story.
August 2017 Newsletter
— Posted August 30, 2017
View our August newsletter on how you can now enroll in a new project created to improve our understanding of risk factors associated with the occurrence of ependymoma and an update from Dr. Vijay Ramaswamy, recipient of the inaugural CERN Basic Science Ependymoma Research Fellowship, including completing the largest-ever ependymoma study.
July 2017 Newsletter
— Posted July 25, 2017
View our July newsletter that includes information about subependymomas (what do they look like on an MRI, what do pathologist report, how are patients impacted and advice from subependymoma patients) and Chris' inspirational story.
June 2017 Newsletter
— Posted June 28, 2017
View our June newsletter that includes how patients, caregivers and advocates participated in Ependymoma Awareness Day, an article about Travis' fundraising campaign created to support the CERN Foundation and Hilary's inspirational story.
May 2017 Newsletter
— Posted May 31, 2017
View our May newsletter featuring an article about our Outcomes Projects that was published in the Brain Tumour magazine, Burke's speech from Ependymoma Awareness Day, how you can support our awareness campaign and Allie's inspirational story.
April 2017 Newsletter
— Posted April 28, 2017
View our April newsletter with an update from Dr. Nicholas Foreman on new immunotherapy trials that aim to prevent recurrence of pediatric ependymomas, how to reserve a butterfly in honor or memory of a loved one and the fundraiser held by Tyler's girlfriend, Nicole, for the CERN Foundation.
March 2017 Newsletter
— Posted March 28, 2017
View our March newsletter featuring the second video released in a series of short films – People of CERN: Jennifer’s Story, ways to organize or create your own Ependymoma Awareness Day event, and Dawn's inspirational story.
February 2017 Newsletter
— Posted February 24, 2017
View our February newsletter announcing Ependymoma Awareness Day - May 8, 2017 and ways you can get involved.
January 2017 Newsletter
— Posted January 20, 2017
View our January newsletter with an overview of the CERN supported Molecular Classification of Ependymoma panel discussion, launch of the new CERN Foundation website and Michelle's inspirational story.
December 2016 Newsletter
— Posted December 29, 2016
View our December newsletter featuring the largest report to date of the impact of ependymoma in adults, ways to cope during the holidays and how you can support our year-end goal.
November 2016 Newsletter
— Posted November 21, 2016
View our November newsletter featuring an article about award-winning filmmakers who humanize the experience of ependymoma through film and Adam's inspirational story.
October 2016 Newsletter
— Posted October 26, 2016
View our October newsletter with an update from Dr. Amar Gajjar on the latest drug and molecular therapies for ependymoma and Shawn's inspirational story.
September 2016 Newsletter
— Posted September 28, 2016
View our September newsletter featuring the first video released in a series of short films – People of CERN: Maci’s Story, a report from CERN experts who analyzed data from our Ependymoma Outcomes Projects to better serve the ependymoma community, and information on how to view or download our FREE Ependymoma Guide.
August 2016 Newsletter
— Posted August 31, 2016
View our August newsletter with information on how to order your FREE ependymoma guide, an inspirational story from Katie, Henry's mom and how to support Childhood Cancer Awareness month.
July 2016 Newsletter
— Posted July 28, 2016
View our July newsletter with an update from Liz Dawes and how the Robert Connor Dawes Foundation is supporting two significant CERN projects, information on how to pre-order your FREE ependymoma guide and how CERN tissue samples were analyzed to find out the impact of surgery and radiation on ependymoma.
June 2016 Newsletter
— Posted June 30, 2016
View our June newsletter with an update from Dr. Terri Armstrong on our awareness, outreach and outcomes projects, information on how to pre-order your FREE ependymoma guide and various stories of Ependymoma Awareness Day events that were held around the world this year.
May 2016 Newsletter
— Posted May 20, 2016
Read our May newsletter with updates on our adult and pediatric clinical trials, how CERN supported research uses new approach to calculate drug doses for ependymoma treatment and Rachel's inspirational story.
April 2016 Newsletter
— Posted April 29, 2016
View our April newsletter with information about a recent published paper on the biology and management of ependymomas, an update on the CERN Research Fellowship, Blayne's inspirational story and information about Ependymoma Awareness Day.
March 2016 Newsletter
— Posted March 30, 2016
View our March newsletter with information on Ependymoma Awareness Day and ways that you can get involved where you live.
February 2016 Newsletter
— Posted February 26, 2016
View our February newsletter announcing Ependymoma Awareness Day - May 2, 2016.
January 2016 Newsletter
— Posted January 26, 2016
View our January newsletter which includes a recap of the 2015 CERN Annual Meeting, researchers supported by the CERN Foundation that presented at the SNO meeting and the Hotchkiss Insurance "No Shave" fundraiser event.
December 2015 Newsletter
— Posted December 20, 2015
View our December newsletter with information on how you can advance our research efforts and tips for coping with the holidays.
November 2015 Newsletter
— Posted November 29, 2015
View our November newsletter which includes how a bake shop owner helps an ependymoma family in need and Sienna's inspirational story.
October 2015 Newsletter
— Posted October 31, 2015
View our October newsletter announcing Kim Wallgren as the new CERN Foundation president.
September 2015 Newsletter
— Posted September 25, 2015
View our September newsletter encouraging you to participate in our online ependymoma outcomes surveys and Ava's inspirational story.
August 2015 Newsletter
— Posted August 28, 2015
View our August newsletter on how you can participate in our online ependymoma outcomes surveys and meet Alvina Acquaye, part of the CERN team.
July 2015 Newsletter
— Posted July 28, 2015
View our July newsletter featuring an article on how CERN investigator publishes landmark paper that identifies eighteen genes that contribute to childhood ependymoma, how the ependymoma community gets involved with Ependymoma Awareness Day and the Foresters baseball team is holding an Ependymoma Awareness game.
June 2015 Newsletter
— Posted June 30, 2015
View our June newsletter which includes an update on CERN's progress: what we have accomplished and how we are expanding, Kimberly's speech from the St. Jude butterfly release and Steve's inspirational story.
May 2015 Newsletter
— Posted May 26, 2015
View our May newsletter featuring the Dismuke's speech at Ependymoma Awareness Day, three latest CERN publications and Samuel's inspirational story.
April 2015 Newsletter
— Posted April 30, 2015
View our April newsletter on ways to create ependymoma awareness where you live.
March 2015 Newsletter
— Posted March 29, 2015
View our March newsletter on how you can participate in Ependymoma Awareness Day by purchasing a butterfly or organizing your own release.