News & Blog

From the CEO’s Desk: June, 2016

Dear NBTS Community:

I just returned from Washington, D.C. after participating in Vice President Biden’s Cancer Moonshot Summit. I was joined by three outstanding and dedicated volunteers, advocates and patients: Jaclyn Sabol Patton, our New York Walk Co-Chair; Andrew Whitney a long-time advocate from Pennsylvania and Connecticut; and Michael Yutkin, Planning and Host Committee Member for our Orange County, CA walk.

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With (L-R) Jaclyn, Michael, and Andrew at the Cancer Moonshot Summit on June 29th in D.C.

Together, we spent a day with hundreds of leading stakeholders from across the cancer research landscape, including patients, caregivers, researchers, business leaders, government officials, and entrepreneurs from all over the country. The vice president challenged all of us to capitalize on the discoveries made in cancer research over the past decade as well as the rapid development of emerging technological developments in the areas of big data systems, medical imaging, nanotechnology and more. He and Dr. Jill Biden also urged us to collaborate, tear down silos, and think big. Like so many, we were inspired by their call to action and NBTS will act on it. And in fact, our two flagship research initiatives in high-grade adult (Defeat GBM) and pediatric brain tumors (Project Impact) are already embodying many of the attributes that the Moonshot is calling for in cancer research. And recently the over $1.2 million in grant-making in low-grade gliomas accomplished with partners including the Dabbiere family, OligoNation, as well as so many oligo-dedicated Walk, Race, and Ride teams also is leading to new collaborative research poised to enable future drug development.

As I talked about in my April and May blogs, the start of 2016 has been a productive one for NBTS and the brain tumor community, with progress and momentum continuing to build. What has built momentum? Frankly speaking: you, as part of the brain tumor community.

Thanks to the efforts of many – we are moving to have greater impact through relationships that raise resources and drive the mission. We thank Shoprite, a chain of grocery stores for partnering with us to raise tens of thousands of dollars in May. Life sciences companies including Abbvie, Bristol Myers, Genentech, Medtronic, NICO, Novocure are stepping up to help on all fronts. Morgan Lewis, a global law firm, continues to provide a staggering amount of support, as does The Colony Group in Boston. And I could go on.

In the area of science, in addition to our funded research programs mentioned above, during the first half of 2016 we saw early, positive results from a clinical trial of a potential therapy that NBTS funded; added one of the world’s best neuro-oncologists to a formal advisory role to our staff; and saw new and improved classifications released by the World Health Organization, moving brain tumor research and treatment further into the precision medicine era.

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Head to the Hill 2016

On the advocacy front, following the largest Head to the Hill advocacy event in DC ever, we continue to play a key leadership role in coalition efforts to increase federal funding for brain tumor research for adults and pediatrics. And thanks to your advocacy the Childhood Cancer: Survivorship, Treatment, Access and Research Act is becoming one of the most widely supported bills in Congress – and we will need you to push it over the finish line.

As we look into the next 6 months of the year, we need to work together to truly advance research through grants, policy and by being an engaged and educated patient/caregiver community. And, as the vice president has said, and we know all too well: we must work with the greatest of urgency.

Here’s what we’re looking forward to working on together with you:

  • Advancing brain tumor research through our “Defeat” efforts in adult and pediatric brain tumors as they are poised to be engines of discovery and development of new and promising treatments.
  • We will gather some of the industries leading experts in brain cancer research, drug development, and policy for the second annual National Brain Tumor Society Scientific Summit on September 29th where this year our theme will be, “Leveraging the Inflection Point in Cancer Research to Advance Brain Tumor Research.” Top minds in the field will share the latest progress in brain tumor scientific research, explore emerging opportunities, and build strong and diverse partnerships to fast-track new discoveries toward a cure.
  • We will invite you to connect with your elected officials back home in August, as part of an upcoming “August Recess Campaign.”
  • We will also hold our second annual National Gray Gala, a national event to celebrate and honor leaders and change-makers in the field of brain tumor and cancer research, bringing together hundreds of patients, survivors, and caregivers, as well as trailblazers in the area of brain tumor science, research, and public policy.
  • Our Fall Event season will hold 10 more Brain Tumor Walks, Races, and Rides around the country, offering more opportunities for the community to rally together and raise awareness, hope, and critical funds to advance our mission toward a cure.
  • We will be launching a new way of honoring and recognizing the many who have, and are still, battling a brain tumor by having their names, or short commemorative messages, float across a poignant, digital “Ribbon of Remembrance.” For a small monthly or annual gift, you can remember an important date in the life of a brain tumor patient, and ensure friends and family in the brain tumor community see their names. More to come on this opportunity soon.

Again, nothing we do would be possible without the dedication and generosity of our supporters…You! Whether you choose to volunteer to work at the registration table of an event; form a team and raise money; raise awareness, engage, and share your story with us on our website and social media; make a donation or gift; advocate to your members of Congress; or start your own fundraising event; we all have a role to play. We need all of you. And we are thankful for all of you. This is your society – It’s your fight; It’s OUR fight.

With Sincere Gratitude,

David F. Arons, JD

Chief Executive Officer

National Brain Tumor Society

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