From the CEO’s Desk: Reflecting on 2018

Greetings and happy holidays to the brain tumor community,

Before we turn over a new year, I wanted to take the opportunity to thank our amazing community of supporters, advocates, volunteers, and partners for making 2018 another year of great progress and momentum in the effort to conquer and cure brain tumors. Though we know that, until we’ve found a cure, progress can never be fast enough for those fighting for survival and improvement in their quality of life, the seemingly small victories we win through scientific discovery, the development of a new treatment strategy, and improvements in policy and health care navigation create meaningful benefit for patients, survivors, and care partners.  

All of these little victories will continue to build, like the proverbial snowball rolling downhill, until this momentum brings us to a time when brain tumors no longer cause undue suffering. And it’s only through your dedication, your support, your passion, your spirit, that we can make this progress.

Indeed, together in 2018, we helped make some existent snowballs larger, while also starting some new ones.   

• Several major clinical trials continued to advance in 2018. And for the first time in years, we have hope that multiple phase III clinical trials of potential new treatments will report results in 2019, possibly ushering in new treatment options for brain tumor patients.
• Immunotherapy for brain tumors is advancing. In 2018, we saw brain tumor patients treated with a number of different immunotherapy modalities in clinical trials, including oncolytic viral therapy (like the drugs PVSRIPO and DNX-2401) and CAR T-cell therapy.
• We infused our current research efforts with nearly $3 million of additional funds, and announced new grants, with glioblastoma survivor Bob Sharpe, for several innovative projects totaling $175,000.
• NBTS-funded research in both our flagship research programs, the Defeat GBM Research Collaborative and Defeat Pediatric Brain Tumor Collaborative, continued to reveal some of the tricks brain tumors play to survive treatment attempts, uncovering novel targets for new treatment approaches.
• We launched our Brain Tumor Experience web resources to address gaps in how brain tumor patients and their care partners obtain and consume information that is vital to receiving personalized care for their diagnosis and at every stage of the brain tumor medical experience. We reached nearly 9 million people from across the globe with these and other resources and information via our website, blog, emails, and social media channels.
  • In conjunction with this effort, we began offering quarterly reports on newly available clinical trials for brain tumor patients, twice-yearly updates on phase III clinical trials, and recurring “Advice Columns” for patients and caregivers. We also hosted our first educational webinar on brain tumor treatments.
• With our partners, we successfully advocated to the National Cancer Institute (NCI) for $4 million in supplemental funding for two major collaborative “multi-omics” research projects.
• With our volunteer advocates and coalition partners, we saw the NBTS-championed Childhood Cancer STAR Act pass through Congress and become a law, marking the successful passage of the most comprehensive childhood cancer legislation ever enacted. These same partners and volunteers helped us secure increased funding for brain tumor research in both the Fiscal Year 2018 and 2019 federal budgets.
• Working with a bipartisan group of legislators, we held a first-of-its-kind, standing-room-only Congressional Briefing for members of Congress and their staff on the experience of living with a brain tumor, the quest to develop new and more effective treatments for patients, and how Congress can help foster future progress.
• NBTS became an initial partner to the NCI CONNECT program for the National Cancer Institute, which aims to advance the understanding of rare adult central nervous system (CNS) cancers by establishing and fostering patient-advocacy-provider partnerships and networks to improve approaches to care and treatment.
• We brought together more than 40,000 brain tumor patients, care partners, advocates, and other loved ones through our nationwide signature events, Community Fundraising, and Gray Nation Endurance programs, and engaged thousands more through social media. These events bring the community together, give us strength in numbers, and help fight the isolation this disease has tried to foist upon us.  

Unfortunately, in this community, we know that with these highs there are often lows. Among the estimated 16,000 Americans who sadly lost their lives due to a brain tumor in 2018 were some of our organization’s long-time supporters, dear friends, and national figures. This past year we had to mourn the loss of Senator John McCain, long-time advocate Michael Yutkin, Race for Hope DC co-founder Lionel Chaiken, and legendary neurosurgeon and National Brain Tumor Foundation forefather Dr. Charles Wilson. We grieve for all these individuals, as well as the many more that this disease has taken from us.

Moving forward, we will work even harder to help all those living with a brain tumor and push the field of neuro-oncology to make progress more quickly. We are going to focus on funding research leading to new treatments and will take “more shots on goal” by funding projects that are squarely aimed at producing new medicines and other therapies that extend survival and improve cognitive and functional symptoms for patients with both malignant and non-malignant brain tumors. We will focus on helping and uniting the brain tumor community. In doing so, we will wage an aggressive effort to make brain tumors a national priority with the Administration, FDA, and National Institutes of Health. Additionally, we will help patients and their care partners find the right care with the right medical experts. Finally, we will make collaborations and partnerships an even greater priority in order to leverage time, talent and resources.

To launch these projects, we will need your help and support in 2019 and beyond. So, whether it’s at an NBTS signature Walk, Race, or Ride; at a Community Fundraiser or Gray Nation Endurance race; at a scientific or medical workshop or conference; online during a webinar or social media chat; or through any number of additional venues, I hope to connect with you in 2019.

Finally, as we, together, think about our vision of conquering and curing brain tumors – once and for all – let’s live by Yoda’s quote, “Do or do not, there is no try.” In 2019, let’s go do it!

With sincere gratitude,

David F. Arons, JD

Chief Executive Officer

National Brain Tumor Society

TAGGED WITH: NIH, Clinical trials, Defeat GBM, immunotherapy, glioma, Patient life, Treatment, astrocytoma, brain tumor community, advocacy, Community, pediatric brain tumor, high-grade glioma, childhood cancer, NCI, biotechnology, brain cancer, glioblastoma, GBM, FDA, biopharma, brain tumor, Cancer

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