Headache on the Hill

Frequently Asked Questions

• How much does it cost to attend HOH?

  The registration fee is on a sliding scale, ranging from $25 to $100. Our goal is $50 per person. However, no advocate will be turned away due to financial limitations. A limited number of scholarships are available to ensure the right advocates can participate.

• What can I expect if I am chosen as an advocate?

  • Before the HOH event begins, you will learn best practices for advocating on Capitol Hill. We’ll offer guidance on how to present your personal story. 
  • You will receive written materials about our “Asks” and be trained on how to successfully present them. 
  • You will have a unique opportunity to connect with other advocates (patients, caregivers, researchers, and providers) who have dealt with similar experiences as you. For many, this is the first time working as a team on an advocacy project.
  • You will be a critical voice in representing the United States’ migraine, cluster and headache community to the people who make policy decisions for our country. 
  • You will be educating Members of Congress about our disease and showing them why we need to be taken seriously.

   

• How much of my time is needed to participate in the virtual HOH event?

  Requirements prior to the event:

  • Watch two to three hours of pre-recorded training sessions.
  • Attend a 90-minute live session to learn about the “Ask” and the technology to be used for the meetings. You’ll be given a choice of times for the live sessions. 
  • Complete a quiz after the training to show a base level of comprehension. 

  On event day:

  You must be available between 8:30 a.m. and 6:00 p.m. in your timezone. Your meetings will be scheduled at various times throughout that day. 

• How do you decide which legislators I will meet?

  To meet with a particular state’s representatives, you must have a physical address in that state. Our goal is for you to visit as many offices as possible. So, we match you with representatives based on your home, work, and other addresses you may have. For instance, you might live in Vermont, work in Massachusetts, and have a vacation home in Maine. You are eligible to meet with members of Congress from all three states.

• Why do you ask for more than one address on the application?

  Our goal is for you to visit as many offices as possible. For instance, you might live in Vermont, work in Massachusetts, and have a vacation home in Maine. You are eligible to meet with members of Congress from all three states. To meet with a particular state’s representatives, you must have a physical address in that state.

• Why do you ask demographic questions on the application?

  Our demographic-based questions help ensure a diverse representation of advocates. 

• Does everyone who applies for HOH get accepted?

  Unfortunately, not. We are limited by the number of advocates we can support for this event. Sometimes, we might have eight to ten applicants from the same state or district. It’s simply not effective to have that many advocates in a meeting. 

  Another consideration is identifying the best mix of advocates. We look for individuals who are comfortable sharing their story and our “ask” in meetings, as well as completing the post-event follow-up.

• What is the dress code?

  At an in-person event, we encourage business-professional attire. 

  For a virtual event, we ask for professional attire for the top of your body. Tee-shirts (even ones showing a group logo or message) are not suitable for congressional meetings. If you own a purple shirt or blouse, we ask you to consider wearing it. Purple is the color for migraine and cluster headache awareness.

• Do I need to be a person who really understands “politics”?

  No. You just need to be passionate about driving change for people living with migraine and cluster headache disease.

• How do I know if I would make a good advocate?

  We look for these qualities in an advocate: 

  • You have been impacted by migraine or cluster headache disease and believe in our cause.
  • You can effectively and succinctly (2 minutes maximum) communicate to Members of Congress and their aides what it’s like to live with migraine or cluster headache. 
  • You are a team player. Our specific requests (called “Asks”) must be the same at all of our meetings. This is not an opportunity to make personal requests or raise other issues. We only make progress when we all pull together.
  • You understand that the Headache on the Hill event can be taxing, both physically and emotionally. The experience has triggered attacks for those living with migraine or cluster headache. Please consider how you would manage your symptoms to effectively participate in your scheduled meetings with Congress. We ask you to make a realistic assessment if attending HOH is right for you. 

   

• How many meetings does an advocate typically have on Tuesday?

  Typically, the average number of meetings for most advocates is between three and six, unless you are from a larger delegation like NY, CA, or PA.

• How long does each meeting last?

  We schedule meetings on your behalf, allotting 30 minutes for each one. Actual time spent with your Senator, Representative, and/or their staffers is typically about 10-15 minutes. You have just enough time to introduce yourselves, share one person’s story, and then present our “ask.” Timeliness is very important for this event. It is crucial to be respectful and arrive at all appointments on time.

• Where do virtual meetings take place?

  You participate in meetings from your computer with an application like Zoom or GoToMeeting. You will need to be connected to the internet and have a camera on your computer or other device. Your team will have a designated “room” where you can practice ahead of time and then convene on the day of HOH. 

• Will I be going to the meetings on Capitol Hill alone?

  No, we always try to have at least two advocates in every meeting. If possible, we like to include a returning HOH advocate in each group.

• Will I meet my Member of Congress, or will it be someone from their staff?

  We always try to schedule you with the Members themselves. If they are unavailable, you will likely meet with their Health Legislative Assistant (HLA). The HLAs are usually young professionals who are incredibly knowledgeable about the issues. As trusted advisors to Members of Congress, they can become your biggest champions.

• Can I take screenshots of my virtual meetings or record them?

  Please be courteous and ask for permission first. However, we wholeheartedly encourage you to take screenshots with the offices that you meet. We also ask you to post these images on social media and tag your Members of Congress. 

  Recording of the meetings is generally not allowed. If you have something that you want to record, you absolutely need to get permission in advance from the individual office.

• What is an “Ask”?

  An “Ask” is an actionable request made to Congress. “Asks” propose a solution to an identified problem that can usually be answered “yes” or “no.” An example of an “Ask” would be to request for your Member to send a letter to another Member or to request that they sign or co-sponsor a specific bill. 

• What will the “Ask” be for Headache on the Hill this year?

  “Asks” are decided shortly before the HOH event. Our choices are determined by two criteria: (1) What is currently happening in Congress, and (2) Which requests we think have the best chance of success. The “Ask” will be shared with you about a week before the event in our webinar training.

• How soon will we know if our “Ask” was successful?

  The fate of our “Asks” cannot be determined within days or even weeks after HOH. Some “Asks” involve projects that have been ongoing for years. This undetermined result can feel unsatisfying to new advocates. It’s important to remember that every meeting builds awareness. Our progress at AHDA is often compared to glacial movement. It happens slowly over time, but eventually it’s significant.