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Head to the Hill Event Details

Your participation in Head to the Hill this spring will help policymakers better understand the urgent, unmet needs of the brain tumor community and build support for the policies that are vital to ensuring availability of treatments, increased scientific research, and the discovery of a cure.

Join members of the brain tumor community on Capitol Hill in Washington, D.C., to raise your voice and make positive change. No prior experience is needed, and NBTS will help prepare you for the congressional meetings. During the in-person event, you’ll receive training and in-depth knowledge of our policy requests and learn how to effectively communicate these positions to members of Congress and their staff.

Whether you’re a patient with a brain tumor, care partner, family member, friend, researcher, or medical professional, we need your voice! Head to the Hill creates an opportunity for a united effort to ensure our community’s needs are heard loud and clear. 

Register by Monday, April 1, to make your voice heard and share your experiences with policymakers on the Hill. Please feel free to contact advocacy@braintumor.org with any questions about the event.

Important Note: There is not an option to attend Congressional Meetings virtually during Head to the Hill in May. Please register only if you are able to attend in person in Washington, D.C., on May 6-7, 2024.


2024 Event Timeline

NBTS provides on-site training in Washington, D.C., on Monday, May 6, 2024, to equip you with the resources you need and to empower you to share your story. On Tuesday, May 7, you will meet with your Senators and  Representative and their staff alongside fellow volunteer brain tumor advocates from your state in their offices on Capitol Hill. Collectively, your group will share personal stories that  communicate the urgent needs of the brain tumor community. 

You must register by Monday, April 1, to participate in Head to the Hill this spring.

Monday, April 1Head to the Hill registration closes. Register now.
Wednesday, April 10Online Head to the Hill trainings available on your participant center
Thursday, April 25Last day to cancel and receive a refund of your $25 registration fee
Sunday, May 5Race for Hope DC: 8 – 11 a.m.
Join the ependymoma community for our Welcome Reception: 4 – 6 p.m.
Monday, May 6Head to the Hill training & practice sessions in state groups
MANDATORY & IN PERSON
Tuesday, May 7Head to the Hill congressional meetings

Frequently Asked Questions

Explore the Q&A below to learn more about this event and how you can get involved.

  • Registration is open to all patients, caregivers, family, friends, researchers, and medical professionals.
  • Anyone participating in congressional meetings must register separately and complete all the required trainings.
  • Each registrant, including children under age 18, must have their own unique email address and registration.
  • Registration closes on Monday, April 1.

Yes. Head to the Hill attendees can book a room in our block through the Hyatt Regency Washington on Capitol Hill. This hotel location is very convenient to Capitol Hill, Freedom Plaza (Race for Hope DC’s location), Union Station, etc. The final date to reserve a room in the hotel block is April 15, 2024. 

Central Reservations number is 202-737-1234.

Yes, valet parking is available for $62 per day.

The Hyatt Regency Washington on Capitol Hill is 0.4 miles from Capitol Hill. Those who can walk to Capitol Hill are encouraged to do so. 

Participants can request a wheelchair-accessible taxi (https://ohr.dc.gov/taxis/request) or a mobility scooter for free that we will provide on Monday at training. You can sign up during registration or email advocacy@braintumor.org.

There is very limited parking available on Capitol Hill. If you are driving, we encourage you to park at Union Station and walk to Capitol Hill.

Advocates can dress casually for the in-person training on May 6. For the day of meetings on May 7, please wear your Head to the Hill t-shirt and business casual slacks or skirt. Wear comfortable shoes on May 7, as getting around Capitol Hill can require a lot of walking.

Head to the Hill in May only takes place in person. If you are unable to attend, we will have a virtual action alert available to help you send a message to your legislators on May 7, encouraging them to support the needs of the brain tumor community. We’ll also have a second opportunity to virtually meet with your legislators this fall. If you have registered for Head to the Hill and can no longer attend in person in Washington, D.C., please contact us as early as possible at advocacy@braintumor.org.

Please join us on Sunday, May 5, between 4 – 6 p.m. for a relaxed reception to gather with others from the brain tumor community and honor Ependymoma Awareness Day after an energizing Race for Hope DC experience earlier in the day. The reception will feature an optional butterfly- or hope-themed painting experience — similar to a canvas and wine event — and a chance to visit with fellow volunteers while enjoying appetizers and drinks at the Hyatt Regency Washington on Capitol Hill (where all Head to the Hill events will occur).

There are a limited number of scholarships available for Head to the Hill 2024 to cover hotel costs. We invite all those interested in financial assistance to apply. The deadline to apply for a scholarship is Friday, March 8. Scholarship applicants will be notified by Friday, March 29. Scholarships are awarded based on a variety of factors, including whether there are other advocates signed up to represent the applicant’s state, as well as their answers to the questions in the application. If you have any specific questions about the scholarship process, please contact advocacy@braintumor.org.

Yes, anyone planning to participate in congressional meetings must register separately. Congressional offices require a list of everyone attending, and we will also need to make sure everyone has individually completed training to schedule them for the meeting. Finally, each participant must register separately and attend the training on Monday, May 6, to receive a t-shirt. 

NOTE: Each advocate must register with a unique email address. If you have any questions or concerns, please contact us at advocacy@braintumor.org.

NBTS will arrange all of your meetings with Advocacy Associates, a logistics firm that specializes in organizing the entirety of Hill Days, and will make every effort to secure appointments for you to meet with your two U.S. Senators and your U.S. Representative. If a Senator or Representative is unavailable, NBTS will schedule the meeting with a staff member. 

Please note that staff meetings are just as important as meetings with the actual Senator or Representative! Staff members are key advisors to the lawmaker and often decide what gets passed on to your member of Congress. These staff members meet regularly with constituents as part of their job. 

Your personal brain tumor story can make the difference between just another meeting and a meeting that results in action and support from your member of Congress.

  • Head to the Hill meetings will be scheduled for May 7, 2024.
  • Please do not set up your own appointments! If you have special contacts with members of Congress or their staff, please contact us at advocacy@braintumor.org.
  • The process of how your meetings will be arranged is as follows:
    • Your home address will be used to match you with the appropriate Representative and Senators
    • You will then be grouped with other attendees according to district, state, then region if necessary
    • You will meet with the offices of Representatives and Senators where your home is located, and any relevant members of Congress that fall under the committees most pertinent to our legislative issues
    • You will have a total of 3-6 meetings
    • An email with instructions on how to download their app and access your schedule will be sent roughly one week in advance. This email will provide you with:
      • Office name and bio
      • Time
      • Location
      • Who you are meeting with
      • Other attendees who will be in the meeting with you
      • Talking points and documents to reference
      • Contact information for scheduling support
  • If you are the only advocate from your state, we will pair you with NBTS staff or experienced volunteers.
  • Advocates are usually scheduled for three or more meetings, each about 15-30 minutes in duration. Meetings can take place between 9 a.m. – 5 p.m. ET at the offices of your Senators and Representative in Washington, D.C.
  • You will have time to meet with your fellow advocates to prepare for your meetings during the training day on Monday, May 6.

Please email advocacy@braintumor.org with any questions.

Head to the Hill training prepares each advocate to share their story most effectively, speak about NBTS’s legislative priorities, and highlight their efforts on social media. Additionally, the training will showcase ways that advocacy creates change, how past Head to the Hill participants have impacted public policies, and why it’s important to advocate for increased medical research funding.

Registered participants will receive more detailed information and an agenda closer to the event.

Your meetings will be scheduled throughout the day on Tuesday, May 7. Nearly every meeting will take place that day between 9 a.m. and 5 p.m. ET.

Your meeting schedule depends on when your congressional offices are available to meet. You will receive your schedule for your meetings via an email from Advocacy Associates containing instructions for downloading their app approximately one week prior to Head to the Hill. The schedule is subject to change at any point until May 7. The schedules will be available on the app and will not be printed on paper.

Everyone will have at least one other person in the meeting with them. Participants will join other advocates from their state or NBTS staff and advocacy professionals who can help navigate the meetings.

Each participant will have time before their meetings on Monday, May 6, to meet in their state groups to prepare. For larger states, participants will meet with other advocates in their congressional district group.

Members of Congress make decisions largely because of the impact legislation will have on their constituents. Each year, we see the value of brain tumor advocates meeting directly with their members of Congress to highlight how these important issues affect members in their district or state.

  • After Head to the Hill in May 2023, NBTS helped secure 109 co-sponsors in the House and four new co-sponsors in the Senate for the Stop the Wait Act, which directs the Social Security Administration to phase out the five-month waiting period to receive SSDI benefits and allow those who are uninsured or unable to afford health insurance to receive Medicare coverage immediately.
  • Due to NBTS’s advocacy efforts in collaboration with the brain tumor community, NIH funding for brain tumor research increased by $20 million in 2023.

Advocates can inspire policymakers to take action on an important policy or issue affecting the brain tumor community.

Yes. In-person training at the Hyatt Regency Washington on Capitol Hill on Monday, May 6, is mandatory, as well as participation in meetings on Capitol Hill on Tuesday, May 7. Participants will likely have 3-5 congressional meetings that will be between 15-30 minutes long. Participants can expect all of their meetings to take no more than two and a half hours during the day. However, the exact time of the meetings will not be confirmed until the week before Head to the Hill and is subject to change. Participants should expect to accommodate a 9 a.m. – 5 p.m. ET schedule when making travel plans. If traveling by plane, please allow adequate time to travel from Capitol Hill to the airport. This may require a flight after 7 p.m. on Tuesday or flying out on Wednesday.

Head to the Hill started in 2011 with 31 advocates going to Capitol Hill to share their stories with members of Congress. It has grown into NBTS’s marquee advocacy event, with hundreds of advocates coming together each year to make their voices heard and motivate policymakers to take action for the brain tumor community. Every spring, we welcome advocates who join us for the first time or return each year to connect with other members of the brain tumor community in person and urge government officials to pass policies that support our vision of conquering and curing brain tumors — once and for all.

NBTS works to ensure that Head to the Hill — an in-person event — is accessible to members of the brain tumor community and that we responsibly use the funds raised by individuals like you in a way that most benefits patients with brain tumors and their families. This $25 registration fee helps cover some of the costs of meeting facilities, scheduling, and more, as well as supporting scholarships for advocates who otherwise could not travel to Head to the Hill.

  • We understand that plans may change, so if you are unable to attend for any reason, you can cancel by Friday, April 25, and we will refund this fee. 
  • Please note that for any cancellations or no-shows after April 25, the $25 fee is non-refundable.  If this registration fee would prohibit you from joining us in D.C., please reach out to us at advocacy@braintumor.org.

Register Today

Join NBTS this year as we advocate for the brain tumor community and affect the lives of more than 1 million Americans living with a brain tumor today and those who will be diagnosed in the future. Your voice matters. By sharing your story with your elected officials and their staff at Head to the Hill this May, you ensure policymakers know this is an important issue to their constituents. 

Space is limited for congressional meetings, so register today!

REGISTER NOW ASK A QUESTION

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