The Holiday season for many is a time for traditions; every year revisiting favorite places, taking part in memorable events, and spending time with the people you care about.
For a nonprofit patient advocacy organization like the National Brain Tumor Society, it also means reviewing progress made in the previous 12 months, and planning for how to create even greater impact for the brain tumor community in the coming year. As such, one of our traditions is our yearly update for the community on how all of your generosity and support is helping us move our mission for better treatments and ultimately a cure for brain tumors forward.
Like in years past, we’ve compiled a list of 10 of our proudest achievements of the year (in no particular order), which we were only able to accomplish with the many contributions made by our dedicated community, no matter how you took action with us in 2014:
To help achieve the goals of our Clinical Trial Endpoints Initiative, National Brain Tumor Society formed a Coalition of our friends in the brain tumor nonprofit community – Accelerate Brain Cancer Cure, Musella Foundation for Brain Tumor Research & Information, and the Society for Neuro-Oncology. Together with the Coalition, we hosted two separate Brain Tumor Clinical Trial Endpoints Workshops that brought together leaders in research, the biopharmaceutical industry, clinical care, and the U.S. Food and Drug Administration (FDA) to discuss ways to make brain tumor clinical trials faster, cheaper, more efficient, and more patient-focused.
We left both Workshops with actionplans to continue to move brain tumor clinical trials in a direction that will aid in getting more treatments to patients – and getting them there faster.
Our Defeat GBM Research Collaborative kicked into high gear, with all four projects within the overall initiative now fully operational. An advisor to the project (world-renowned cancer researcher, Dr. Anna Barker) proclaimed during a scheduled check-in that, “I think there has been a lot of progress…I applaud NBTS for taking the leadership here; fabulous progress that you all have made.”
After a thorough review of the pediatric brain tumor and cancer landscape, including seminal meetings with all of the stakeholder groups that are key to developing treatments for children with brain cancer, we launched a new, integrated pediatric research and drug development program. Project Impact will confront the interrelated barriers that are currently hindering progress for children with deadly brain tumors.
The project has been ramping up and drawing interest from across the field, including multiple working group meetings with leaders in pediatric cancer research and drug development from around the world.
Speaking of pediatrics, the National Brain Tumor Society Public Policy team participated in a number of advocacy events this year in Washington, D.C. – including, for the first time, the White House! – to urge congress and other important government groups, like the National Cancer Institute (NCI), to provide stronger support for pediatric brain tumor and cancer research and drug development.
For these efforts National Brain Tumor Society Chief Public Policy & Advocacy Officer, David Arons, was recognized by the NCI for leading the successful effort to get the NCI Council of Research Advocates to focus on pediatric cancer research.
Our Annual Head to the Hill advocacy event continued to grow, with a record number of you joining us on Capitol Hill in May to ask Congress to A) Prioritize cancer research funding, B) Grant equal access to oral chemotherapy, and C) Improve pediatric research and drug development. The event drew nearly 150 brain tumor advocates from 32 different states and the District of Columbia to Capitol Hill to educate their respective congressional delegations on the critical issues currently facing the brain tumor community. And our voices were heard!
The NCI and National Institutes of Health received increases in funding for 2015.
The number of co-sponsors of the Cancer Drug Coverage Parity Act (oral chemotherapy parity bill) increased to 92 on a bi-partisan basis (a net gain of 30 members from the previous year).
The NCI announced the launch of a new genomics based pediatric cancer clinical trial focusing on solid tumors, including brain tumors, and it renewed funding for pre-clinical drug testing on pediatric glioblastoma.
In later 2014, we named a third grant-recipient under our Oligodendroglioma Research Fund, and convened all three funded researchers at our annual Summit to discuss the state of the field, their research projects, and strategies to accelerate progress towards better treatments for this type of brain tumor.
During July and August, we asked the community to take part in a Patient & Caregiver Survey to help inform the ongoing efforts of our Clinical Trial Endpoints Initiative. The response from all of you was astounding. We received more than 1,800 submissions and learned a great deal more about the wants and needs of brain tumor patients, survivors, caregivers, and loved ones. And we shared these findings with doctors, researchers, drug makers, and government officials. Some of the results were even presented at the 2014 Society for Neuro-Oncology Scientific Meeting, the premier conference in the brain tumor field.
National Brain Tumor Society helped the Society for Neuro-Oncology and Oxford University Press launch the new journal, “Neuro-Oncology Practice.” Most oncology-related journals publish scientific news from academic research studies. As the amount of scientific findings about brain tumors continue to grow, there needed to be a journal dedicated to translating these research results into practical applications for health care professionals in the field. In other words, a journal to help better inform doctors who treat brain tumor patients on how the latest scientific findings should (or should not) effect their treatment decisions – that’s where we hope Neuro-Oncology Practice will play an important role.
National Brain Tumor Society-funded research contributed to 33 field-advancing papers published in some of the top scientific journals in the world.
National Brain Tumor Society funding helped lead to the recent finding of what researchers are calling “the first gene linked to familial glioma” – an important step forward in the field’s understanding of the causes and risk factors for certain brain tumors.
Our focus on being good stewards of the extraordinary contributions we receive from our community was recently recognized by Charity Navigator, America’s top independent evaluator of charities. Charity Navigator awarded National Brain Tumor Society with its highest rating, the coveted four-stars. As Charity Navigator noted, “Receiving four out of a possible four stars, indicates that your organization adheres to good governance and other best practices…and consistently executes its mission in a fiscally responsible way.” Only around 25% of all charities that are evaluated earn this top rating, “indicating that National Brain Tumor Society outperforms most other charities in America. This ‘exceptional’ designation from Charity Navigator differentiates National Brain Tumor Society from its peers…”
We promise to continue to our “four-star” approach as we kick-off 2015. With your continued, steadfast support, we know we can make 2015 an even more impactful year for the brain tumor community.
Thank you for you generosity and commitment. Together we can transform tomorrow, today.