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From the CEO’s Desk: Join Us In Recognizing Childhood Cancer Awareness Month

Every September, we join with friends across the cancer community in recognizing and honoring our most vulnerable cancer patients: kids.

Childhood Cancer Awareness Month (CCAM) is a yearly reminder of the sacrifices and struggles that children and their families face after a cancer diagnosis, as well as the triumphs, achievements, and spirit of these brave young patients.


NBTS staff and volunteers at CureFest on the National Mall during CCAM 2015

But it is also a time to take action – to remember that though tremendous progress has been made over the years against certain pediatric cancers, there are still too many children dying from cancer. We need to provide hope for brighter futures for these children by showing them that the entire cancer community, and all of America, stands behind them and is willing to fight for them.

Unfortunately, in our corner of the cancer community, brain tumors heartbreakingly fall into the category of pediatric cancers that have seen too-little progress. Pediatric brain tumors are the most prevalent from of cancer in children and adolescents ages 0-19. Worse, pediatric brain tumors are the leading cause of cancer-related deaths in children 14-years old and younger, now surpassing leukemia. Yet, we still have never seen a treatment developed specifically for pediatric brain tumor patients, and the most aggressive type of pediatric brains tumors – high-grade gliomas, including diffuse intrinsic pontine glioma (DIPG) – do not even have what the medical community refers to as a “standard of care.” For these patients, survival is measured in months, not years.

We need to do better. And there is no better month than September and CCAM to re-double our efforts to fight pediatric brain tumors.

This CCAM, you’ll see the National Brain Tumor Society do the following:

  • Launch a major campaign to, for the first time, provide sustainable, philanthropic support for a unique global research collaborative that will take new approaches toward funding and conducting pediatric brain tumor research, with the ultimate goal to drive the creation of better treatments for these vulnerable patients. Stay tuned for more – including a public launch – mid-month
  • CCAM Webinar: This webinar, featuring PhD Ann Kingston, will help provide information about the challenges of pediatric brain tumors, as well as patient education information and details about coping with pediatric brain tumors. Come back soon for information about date and time.
  • Public Policy Advocacy – This month we will take part in various advocacy activities (below) in coordination with the Alliance for Childhood Cancer, while, particularly advocating for the passage of the Childhood Cancer STAR ACT, one of our legislative priorities.
    • CureFest 2016 September 17-18, National Mall (NBTS will have a table at CureFest and will also be assisting in the Legislative tent)
    • Congressional Childhood Cancer Caucus SummitSeptember 23, Capitol Hill
  • Tulips Against Tumors: Our beautiful, annual fundraising campaign encourages you to purchase tulip bulb packages so that you will see gorgeous, delicate tulips bloom in the spring. Our friends at EcoFlowers donate a portion of the proceeds to NBTS. Honor friends, family and loved ones today by purchasing tulips. This year there will be a special pediatric package, whose proceeds will help NBTS fund pediatric brain tumor advocacy and research.
  • Social Engagement: Follow us on FacebookTwitterLinkedIn and Instagram to share poignant stories, videos, blogs and content that will help pediatric brain tumor patients and their families raise their voices. Use the hashtag #CCAM
  • New videos, podcasts, and blogs: Check out our new videos on our YouTube page as well as our blog about Childhood Cancer Awareness Month. We ask you to share these videos and content pieces with your networks, because someone you know (or their friends) could benefit from this information.

At NBTS, while we focus on kids all year long (one-third of the organization’s research budget is dedicated to pediatric brain tumors), we want you to take particular heed of pediatric brain tumor patients during September and join us during CCAM and engage and/or in our many activities planned for this month.

Thank you as always for your support.

With sincere gratitude,

David F. Arons, JD

Chief Executive Officer

National Brain Tumor Society

P.S. Also remember we have a number of events in September across the country that you participate in:

Silicon Valley Brain Tumor Walk – Saturday, September 10, 2016
Baltimore Brain Tumor Walk – Saturday, September 10, 2016
Orange County Brain Tumor Walk – Saturday, September 17, 2016
Long Island Brain Tumor Walk – Saturday, September 17, 2016
National Brain Tumor Society 2nd Annual Scientific Summit (Boston, MA) – Thursday, September 29, 2016

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