Community and Government Relations Update

A message from the National Brain Tumor Society
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Community & Government Relations Update

May 2020

Vol. 9, No. 5

  • Head to the Hill 2020 was a success!
  • Brain Tumor Awareness Month Proclamations
  • NBTS Patient and Caregiver Support 
  • Do You Need Masks?
  • Save the Date: GBM Awareness Day 2020
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Head to the Hill 2020 was a success!More than 600 brain tumor patients, caregivers, medical professionals, and industry partners registered to join this year’s virtual Head to the Hill event. We ultimately saw participation from more than 1,500 advocates from all 50 states who sent over 5,000 messages to Congress on the importance of medical research funding for the brain tumor community! 

We are so grateful for all of you who participated in Head to the Hill, shared your stories with your members of Congress, asked your friends and family to take action, and joined us throughout our day of action to connect with others in the brain tumor community. You sent a clear message to Capitol Hill: the brain tumor community needs better treatments and a cure.

If you participated in Head to the Hill and have not yet shared your feedback, please take our survey today

For a recap of Head to the Hill 2020, including photos and videos, please view our recent blog post, “Sights and Sounds of Head to the Hill 2020.”

If you haven’t yet asked your friends and family to take action, there’s still time! You can share this link with them now and continue to increase our impact.

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Brain Tumor Awareness Month Proclamations

Requests for state proclamations designating May as Brain Tumor Awareness Month were submitted by advocates in 46 states. While we had aimed to have proclamation requests in all 50 states, some states have paused the proclamation process during the COVID-19 pandemic. This is a large increase from previous years, when we had approximately 25 proclamation requests. Thank you to all of the advocates who raised their hands to make the request in their state. Watch for pictures of advocates with their proclamations on our social media feeds in the coming days!

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NBTS Patient and Care Partner Support Services

NBTS is unrelentingly committed to providing our brain tumor community with the support, education, and resources needed to feel empowered and prepared to navigate a brain tumor diagnosis. Putting patients first during these uncertain times of COVID-19, NBTS has stepped up the programs it offers, including a weekly updated webpage, COVID-19: What our Brain Tumor Community Needs to Know, and announcing its newest service, the Personalized Support and Navigation Program. Patients and caregivers can connect directly with our NBTS Patient Navigator at patientnavigator@braintumor.org.

Other initiatives offered to the brain tumor community continue to include our Brain Tumor Experience resources, the NBTS Clinical Trial Finder, and monthly the Brain Tumor Support Conversations – a platform for digital, peer-to-peer support and community engagement, bringing people together to share perspectives, support, and insights.

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Do You Need Masks?

A huge thank you to Karyopharm Therapeutics for their generous donation of medical-grade masks for our brain tumor community. If you are in need and would like to request a shipment of complimentary masks, email patientnavigator@braintumor.org and NBTS will ship some to you.

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GBM Awareness Day 
July 22, 2020

This year, we are once again working with our champions in Congress to officially designate a dedicated Glioblastoma Awareness Day in the United States. Spearheaded by the National Brain Tumor Society, in collaboration with leaders in Congress and the brain tumor community, we will join together for #GBMDay this year on July 22, to honor and act for those affected by glioblastoma (GBM). 

Stay tuned for more details in the coming weeks on ways you can be involved.QUESTIONS?
CONTACT US

National Brain Tumor Society unrelentingly invests in, mobilizes, and unites our community to discover a cure, deliver effective treatments, and advocate for patients and care partners. Our vision is to conquer and cure brain tumors – once and for all.Was this e-mail forwarded to you? Subscribe today.55 Chapel Street, Suite 200, Newton, MA 02458617.924.9997 | Contact Us | www.braintumor.org | Donate© National Brain Tumor Society – All Rights Reserved. Unsubscribe

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