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A Roadmap for a Successful 2016: Focus. Community. Leadership.

Just like the President of the United States, governors and mayors across country who take every January to deliver State of the Union/State/City addresses, I didn’t want to let this month slip by without letting all of you – our valued community – know how NBTS plans to make the most of the trust, time, and support you give to us.

Our vision for 2016 is based on three central principles: focus, community, and leadership.

Focus

Our mission remains the same: to find better treatments and ultimately cures for adult and pediatric brain tumors. Yet, we enter into 2016 with greater focus than ever on advancing research as well as the knowledge of what needs to be done to get there.

While, brain tumors – particularly malignant gliomas – present some of the most difficult challenges in biomedical research today, and outright cures remain elusive, we are committed to our overall goal to change the course of this disease, and that is to make malignant brain tumors a chronic manageable disease within ten years.

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Me with Vice President Biden and NBTS Chief Research Officer, Carrie Treadwell, at the GBM AGILE launch

We can do this with a single-minded emphasis on pushing the brain tumor research field farther into a precision medicine paradigm.

As such, the Defeat GBM Research Collaborative, now entering it’s second full-year of scientific endeavors, is poised to translate significant discoveries made in 2014 and 2015 into a slate of drug candidates ready for sophisticated pre-clinical testing in 2016. This year, Defeat GBM will also seek to add an immunotherapy core, and examine the ways in which it aids – and benefits from – the adaptive, biomarker-driven GBM AGILE trial announced in late 2015. Similarly, we hope to launch a companion model for precision medicine in pediatric brain tumors, the Defeat Pediatric High-Grade Glioma Research Collaborative, in 2016. After forming the necessary collaborations, project plans, and leadership in 2015, this initiative is primed to change the way pre-clinical pediatric brain tumor research is conducted and enable earlier entry of promising drug candidates into clinical trials. Further, our oligodendroglioma and low-grade glioma research efforts are benefiting from new findings about the biological underpinnings of these tumors, which, with the aid of a number of new grants coming in 2016, will move this traditionally underfunded area of research closer to clinically-meaningful developments.

Both Collaboratives embrace partners and contributors. I would welcome your interest in helping to propel these initiatives forward.

Finally, we will support and advocate for major legislation in the U.S. Congress that will facilitate and accelerate precision medicine, including the 21st Century Cures Act, Childhood Cancer STAR Act, overall National Institutes of Health (NIH) and National Cancer Institute (NCI) funding, and future biomarker/biospecimen legislation.

Community

I’ve said this before, but it bears repeating: the strength of NBTS – and the reason our name ends with the word ‘Society’ – is in our supporters and volunteers. This is a group that includes, clinicians and researchers working in the brain tumor field; biopharmaceutical companies who are developing many of the potential new medicines to treat brain tumors; policy-makers (both regulators and legislators), whose rules and laws govern the field; and, most importantly, patients, survivors, caregivers, family and friends affected by brain tumors. Everyone who is united by our mission has a role to play, and in 2016 we want to engage more deeply with you all.Garnick-Moore-Photographers_BTR2014-40338

This year, we will continue to collaborate with constituents from all corners of the brain tumor community. As we do so, we will need to work together to further invest in critical research; advocate for more policies that will fast-track brain tumor research and improve patients lives, as well as for more patient-centric drug development; and empower patients to play a more active role in their own care and treatment decisions through education.

Most importantly, we want to hear from you. If you aren’t already, please join the conversations happening on our Facebook and LinkedIn pages and Twitter feed; come out to an event and meet some of our dedicated staff; use the “contact us” form on braintumor.org; share your story; sign-up to be an advocate; and stay updated by subscribing to our blog, YouTube, and eNews channels. We can’t reach our goals without you. As our saying here goes: It’s Your Fight, It’s Our Fight.

Leadership

There are many great advocates speaking up for the brain tumor cause, many generous supporters raising funds and providing resources to the fight, and many devoted clinicians and researchers working toward moving the best science out of the lab and into the clinic. And with all that is at stake, motivation and resolve are not missing from our shared mission.

Thus an essential way in which NBTS can make a difference in this field is by providing coordination, convening stakeholders, facilitating conversations, and offering leadership; leadership that is conferred through the power of our supporters and the trust placed in this nonprofit organization as an objective enabler in the field.

NBTS takes this leadership role seriously. We seek to ensure the biggest barriers to progress are being addressed, and that the top priorities for patients – past, present, and future – are tackled. If we see an impediment to our mission, we confront it. If we see an opportunity to speed advances or raise the hand of the brain tumor community, we take it.

Randall-Garnick-Photography_NBTS-Summit-2015_098In 2016, NBTS has already submitted recommendations on Vice President Biden’s cancer moonshot initiative at the request of his office, and we aim to work with his new Taskforce to strengthen the fight against cancer, including brain tumors. Further, I will continue to serve as the Chair of the NCI’s Council of Research Advocates, allowing NBTS and brain tumor patients to have a strong voice at the table within the government’s lead institute in its ‘war on cancer.’

Finally, we will continue to lead the Jumpstarting Brain Tumor Drug Development Coalition with our friends at Accelerate Brain Cancer Cure, the Musella Foundation for Brain Tumor Research and Information, and the Society for Neuro-Oncology to work with leaders in industry, academia, the NCI, and the U.S. Food and Drug Administration to concentrate on many issues downstream of research funding that impact the evaluation and approval of potential new brain tumor medicines. In 2016, this group will be key helping create more opportunities for treatments that can help patients – whether by extending life or improving symptoms and quality of life – to enter the market.

I thank all of you for your past support, commitment, and inspiration. I also want to thank our hardworking staff and Board of Directors at National Brain Tumor Society that, like you, believe in our mission and want to empower our community. I’m looking forward to a year full of progress, as there is no better time than now to keep the momentum going and build off the advances we’ve already made together until we find cures.

With Sincere Gratitude,

David F. Arons, JD

Chief Executive Officer

National Brain Tumor Society

  • Holly Makovic Houska

    David, you are an influential leader and an experienced voice in the battle to find cures for those diagnosed; provide support for patients and loved ones dealing with the stress and trauma of brain tumor diagnosis; and advocate our representatives in the Senate and Congress to support legislation that impacts the brain tumor community. Thanks for the update, and thank you for all that you do.

  • Rhonda

    I lost my 43 yr old baby sister, my only sibling to Glioblastoma Multiforme Brain Cancer. She was with us 13 months after diagnosis. She met Jesus face to face on her youngest sons 16th birthday November 23, 2014. I am her voice now, I am an Advocate and determined to make sure there is more Awareness and I will be holding fundraising events to donate to research for GBM. I personally feel this type of brain cancer should be place forefront. It has been around for decades and it’s time to put it on top! I live in a small town and within a 50 mile radius I personally know 6 people who have had Glioblastoma Multiforme Brain Cancer and all under 50 years old. That’s way too many, but I can’t imagine how many in the USA has it if I know 6. I’ve been a nurse for 28 years and understand how complex GBM is, so much that’s it’s scary, especially since it’s been around for so very long. I’m definitely going to do all I can as an Advocate, and I Pray that before I meet my Lord, I will hear about it on TV, in the magazines, etc. Let everyone know we need everyone’s help!! Thank you for all you do! May God Bless You! Rhonda

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