Dear NBTS Community,
Shortly after reports of coronavirus outbreaks emerged across the country in early March, NBTS provided an update to our community detailing plans to move all of our activities and events scheduled through June 2020 to virtual platforms. While we were saddened by the thought of not being able to connect — a hallmark of the NBTS experience — with all of our amazing supporters in person this Spring, in many ways the decision was a no-brainer (no pun intended). As an organization devoted to the health and well-being of the brain tumor community, we had to make the safety of our dedicated teams, volunteers, advocates, sponsors, partners, and staff our top priority. But we also told you that we were committed to maintaining compelling and meaningful online experiences for our community, and, more importantly, managing the focus on our mission, even during these challenging times.
Today, I wanted to share with you what we’ve been up to since that last update, as well as detail our plans for the remainder of the Spring:
#1: We’re Boosting Our NBTS Patient and Caregiver Support, Connection and Navigation Services
- Our Community Relations team quickly created a comprehensive set of resources and information called, “COVID-19: What the Brain Tumor Community Needs to Know.” We’ve been updating this page regularly with new tips, guidelines, and links to helpful information that can help patients and caregivers understand how to keep themselves safe and protected during the COVID-19 pandemic.
- We’ve been raising awareness for participation in our monthly peer-to-peer virtual support group, Brain Tumor Support Conversations. This past Sunday (4/19), we had our most-attended monthly meeting to-date and our volunteer co-facilitators, Adam Hayden and Lisa O’Leary, continue to do an outstanding job fostering a welcoming environment for anyone who’s been impacted by a brain tumor to come to discuss issues and challenges they are facing.
- Just this week, we launched a new service, the NBTS Personalized Support and Navigation Program. For years, NBTS offered our assistance to patients and caregivers who have reached out in need of information and/or other resources related to a brain tumor diagnosis and/or treatment. We are now formalizing our program in order to meet the demand from patients and caregivers. Staffed by an experienced medical professional with decades of experience helping brain tumor patients and their families, Mary Lovely, PhD, RN, CNRN, this service will respond to outreach from brain tumor patients and caregivers and guide them to accessible, evidence-based information. Mary will empower members of our brain tumor community with key tools, resources, and opportunities to make more informed decisions about their care. We hope this service will provide a new layer of support, care, and comfort for the brain tumor community, especially in light of how COVID-19 affects the accessibility of brain tumor care. While we would have scaled-up this program regardless, we understand that now — perhaps more than ever — this type of service is needed in the community.
#2: We’re Moving Forward with a Concerted Effort to Focus on Connecting, Caring, and Resilience Throughout the Rest of the Spring
Virtual connection is powerful, too! Join us across the country as a caring and connected community during Brain Tumor Awareness Month and beyond. We invite you to join us for our regional virtual events, which will bring together thousands of amazing teams, individuals, and dedicated sponsors and showcase the power of all of us working together. Take action to advance our policy agenda with Congress through the first-ever virtual Head to the Hill advocacy day. We’ll also soon be offering a “DIY fundraising toolkit” so you can unite your local community for a virtual event of your choosing in support of our shared mission. Stay tuned for more information on all the ways we can get together, support each other, and persevere through these challenging times while staying on track to meet our shared goal of curing brain tumors.
#3: We’re Continuing to Advance Research Forward to Defeat Brain Tumors
There have never been as many truly promising research leads that could turn into new and better treatments than right now. As a field, we have to safely advance research that’s able to continue during the COVID-19 crisis, and then quickly scale up again safely at the right time. With your support, NBTS will soon be able to jumpstart several new treatment R&D programs, engaging universities, hospitals, and biopharmaceutical companies to target pediatric (including DIPG and other pediatric high-grade gliomas) and adult gliomas (including glioblastoma, oligodendroglioma, astrocytoma, and ependymoma), as well as meningiomas, and yield significant and tangible benefits for all tumor types. We will also continue our work with the FDA to reduce the barriers to the evaluation of promising treatments and work with the National Institutes of Health on research funding strategies for brain tumors.
During these continued challenging times of COVID-19, our ultimate hope is for us to come together as one national brain tumor community in an unprecedented way in May, Brain Tumor Awareness Month. We also must forge ahead as much as possible with our mission, as a brain tumor diagnosis is also an urgent, unmet medical crisis and this global pandemic does not change that unfortunate truth. In fact, as a community, we are now dealing with what could be considered a crisis within a crisis. So while we understand that these are difficult times for many, your support and participation at any level during this time is most appreciated so we can keep serving patients and caregivers and driving toward our mission.
Finally, we want you to know that we’re here for you, and always will be until, together, we conquer and cure brain tumors once and for all.
Be safe, be well, and thank you for being with us.
David F. Arons, JD
Chief Executive Officer
National Brain Tumor Society