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National Brain Tumor Society Stresses Urgent Patient Needs and Experiences During Brain Tumor Awareness Month 2018

2018-04-30

Largest brain tumor nonprofit in the U.S. rallies supporters to raise their voices in support of the brain tumor community  


National Brain Tumor Society (NBTS), the largest nonprofit dedicated to the brain tumor community in the United States, today announced its theme and plans for Brain Tumor Awareness Month (BTAM) 2018, highlighting the real, urgent, and at times heartbreaking obstacles patients and care partners face while we march toward progress for this disease. The NBTS team will use digital storytelling to raise the voice of the brain tumor community for the country to hear.

“Unlike other cancers or tumors, brain tumors impact the part of you that makes you ‘who you are’ as a human,” said David F. Arons, JD, Chief Executive Officer, National Brain Tumor Society. “The brain determines how you express yourself, how you think, how you dream; and it controls virtually all of your body’s vital functions. And when it is compromised, by the disease and treatments, our abilities and life itself may be at risk. Mental and physical decline can limit independence, career and educational opportunities. Personality and emotional changes can take a toll on relationships and family. This is a reality that many brain tumor patients, survivors, and their loved ones have to deal with. These aspects are too often not fully appreciated, and we urge all Americans to become better educated about the brain tumor patient experience.”

Mr. Arons goes on to say, “This May, during National Brain Tumor Awareness Month, we will bring the brain tumor experience including the courage and determination of patients, survivors, and care partners to the forefront.  In doing so we ask that Americans, join in support, get-to-know, and fight for the brain tumor community.”

National Brain Tumor Society activities for Brain Tumor Awareness Month (BTAM) 2018, include:

  • Share Your Story/#BTVoice – All Month

New video segments and content to illustrate how our brain tumor community fights every day.

  • InfoSnaps – All Month

Shareable digital “InfoSnaps” to provide key information about brain tumors.

  • BTAM Facebook Live – Thursday, May 3

The NBTS social media team will host a Facebook Live event on May 3rd to kickoff Brain Tumor Awareness Month and discuss ways supporters and advocates can get involved.

  • #BTSM/BTAM Tweetchat– Sunday, May 6th

An online, Twitter conversation that will discuss Brain Tumor Awareness Month, facts, and ways to raise our collective voices for the brain tumor cause. 

  • Facebook NBTS/BTAM Profile Picture “Frame”– All Month

Supporters can spread awareness on Facebook with our new #BTAM frame. Supporters can update their profile picture using this link: https://www.facebook.com/profilepicframes. Supporters can find our three frames by typing in “Brain Tumor Awareness Month.”

  • State Proclamations– All Month

An advocacy campaign to encourage volunteers from the brain tumor community across the country to ask their respective governors to declare May Brain Tumor Awareness month in their state, in conjunction with the federal designation.

The largest annual fundraiser in the country benefiting the brain tumor community, organized in collaboration with Accelerate Brain Cancer Cure, rallies more than 10,000 brain tumor patients, survivors, care-partners, and advocates on the streets of our nation’s capital to raise awareness and funds for research.

The largest brain tumor-specific advocacy event in the country – hundreds of volunteer advocates from 38 states will hold more than 200 meetings on Capitol Hill to speak with Congress about policies that will impact the brain tumor community. NBTS is also partnering, again, with the Collaborative Ependymoma Research Network to hold the annual Ependymoma Awareness Day and butterfly release in conjunction with Head to the Hill.

  • Congressional Action Day – Tuesday, May 8th

Brain tumor advocates unable to attend Head to the Hill in person will receive “action alerts” for a simultaneous ‘Congressional Action Day’ to echo our voices on the Hill, by calling or emailing their members of Congress.

  • Defeating Brain Tumors Congressional Briefing – Tuesday, May 15th

NBTS staff, advocates, and research advisors will host a first-of-its-kind 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. The event is being hosted by Senator Lindsey Graham (SC), with co-host Congresswoman Barbara Comstock (VA),in cooperation with Congressman Jim Langevin (RI), and with honorary co-hosts Senator Ed Markey (MA) and Senator Susan Collins (ME).

Finally, a host of community-based fundraising and awareness events will take place across the country, and NBTS will regularly be sharing blogs and social media posts.

To follow along with NBTS throughout the month individuals can use the hashtags #BTAM, #BTVoice, and #BTSM and visit http://braintumor.org/btam2018.

Nearly 80,000 Americans will receive a brain tumor diagnosis in 2018, and with only a 35 percent five-year survival rate for primary malignant brain tumors, an estimated 17,000 people will die because of brain cancer this year. Brain tumors are now the leading cause of cancer-related death in children 19-years old and younger, accounting for three out of every 10 cancer deaths. There are no known prevention or early detection methods, few available treatments, and there is no cure. 

About National Brain Tumor Society

National Brain Tumor Society (NBTS) is the largest nonprofit organization in the U.S. dedicated to the brain tumor community. We are fiercely committed to finding better treatments and driving rapid progress toward a cure for brain tumors. We drive a multi-faceted and thoughtful approach to aggressively influence and fund strategic research, as well as advocate for public policy changes, in order to achieve the greatest impact, results, and progress for brain tumor patients. Money raised by the generous donations of our supporters has directly funded groundbreaking discoveries, programs, clinical trials and policy initiatives. To learn more visit www.braintumor.org

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