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    Emilia Clarke – A Battle for My Life
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    Spotlight on Brain Aneurysm Survivor Tom Tinlin
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    These Are the Differences Between a Stroke and an Aneurysm
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  • January 23, 2019
  • BAF
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Advocacy Toolkit

Thank you for your continued support of the Brain Aneurysm Foundation and a special thank you to those of you who participated in the 8th Annual Advocacy Day on Capitol Hill on March 27, 2019. While the Annual Advocacy Day is extremely important, there are many other opportunities for you to be a proactive advocate for the brain aneurysm community throughout the year. As part of our advocacy efforts, we are excited to share with you some tactics and tips to help you stay engaged with your Members of Congress year-round. These will be posted on our website and updated as appropriate.

As you may know, our top federal legislative priority at the moment is increasing the federal investment in brain aneurysm research funding through legislation known as Ellie’s Law. Ellie’s Law would authorize $5 million each fiscal year, for five years, to the National Institute of Neurological Disorders and Stroke (NINDS) to conduct or support further comprehensive research on unruptured intracranial aneurysms, studying a broader patient population diversified by age, sex, and race. Ellie’s Law also honors several women who passed away as a result of a brain aneurysm.

Our goal is to secure more Members from both political parties to sign on to Ellie’s Law as cosponsors. This is where you come in!

We have developed an advocacy toolkit to help you become a more effective advocate and ensure the interests of the brain aneurysm community are heard and prioritized at the federal level. These tips will help guide you through impactful ways of communicating and engaging with your elected officials, beyond the annual spring visit to DC.

* * *

Advocacy Toolkit
In this advocacy toolkit, we’ve described our top 6 congressional engagement tactics for you to stay engaged with your Members of Congress year-round.

Before beginning, if you aren’t sure who your Members of Congress are, you can look them up here:
Look up your Representative here
Look up your Senators here

(1) Email the Healthcare Staffer
Sending an email to legislative staff in your Member’s office is a productive way to highlight Ellie’s Law and underscore why you believe additional brain aneurysm research funding is needed. Throughout the year, you also can share relevant news articles and new developments related to brain aneurysm research or efforts in your community. Most congressional websites have instructions about how to email the office. We recommend emailing the healthcare staffer directly, so you can develop a personal relationship with the staffer who is responsible for handling this type of issue. The best way to identify the healthcare staffer is to call your Member’s Washington, DC office and ask for the healthcare staffer’s name and email address.

(2) Call the D.C. Office
Calls are another way to stay engaged with your Member’s office. Phone conversations should remain short and concise – approximately 5 minutes. Again, ask to speak with the healthcare staffer and try to develop a relationship with that person. Calls are most effective after you have developed a relationship with a particular staffer, either in person or via email. There should be a reason for the call — either to provide an update on your organization or family’s community activities and/or to make an “ask” of the Member. Asks can include something general like asking the Member to support increased funding for brain aneurysm research or something specific like cosponsoring Ellie’s Law or coming to speak at your charity event.

(3) Request a Meeting in Your District
To set up a meeting with your Member to discuss Ellie’s Law, call your Member’s local district office for the “district scheduler’s” contact information. The district scheduler will likely ask you to email the details and purpose of the meeting. The request should include the purpose of the meeting, requested dates/times, and likely attendees. If possible, in your request, you should offer a variety of dates to accommodate the Member’s busy schedule. Most importantly, emphasize you are a constituent and make the case as to why the Member should want to attend by including specific details about the local community. If your Member is unavailable, you can request a meeting with the district staff. Staffers communicate regularly with their Members and often have a deeper understanding of the specific issues under consideration in Congress, so meeting with staff is worthwhile. When entering a meeting with your Member or their staff regarding Ellie’s Law, it is important to advocate in a strategic manner.

Talking Points
During the meeting, you should:

• Introduce yourself and state that you are advocating for Ellie’s Law.
• Share your personal story and why you are involved with brain aneurysm advocacy.
• Provide a concise background on brain aneurysm statistics, explain the mission of the BAF, and state what Ellie’s law seeks to accomplish.
• Describe the disparities in federal research funding and how brain aneurysms receive disproportionately low research funding despite their prevalence.
• Ask your Member to support Ellie’s Law.
• Send a thank you e-mail and continue to follow up.

Congressional recess is an excellent time to approach your Member in your district and advocate for support of Ellie’s Law. A district work period, also known as recess, is a temporary break in congressional proceedings. These work periods allow for Members to return to their home states or districts, study legislation, attend meetings or town halls, and participate in fundraisers. Congress is typically in recess during the entire month of August, and often weeks preceding or following major federal holidays (e.g., Easter, Independence Day, Christmas).

(4) Use Social Media
Members of Congress use social media as a key method for communicating with their constituents – from announcing policy positions and providing updates to soliciting feedback and perspectives on specific issues. We encourage you to “follow” or “like” your Members on Facebook and Twitter and subscribe to their press releases and newsletters – Members usually offer this option on their websites. Another great way to get a Member’s attention is to “tag” your Member in a social media post to encourage them to sign on to Ellie’s Law.

(5) Publish a Letter to the Editor or Op-Ed
Most congressional offices – and especially larger Senate offices – monitor the local news media daily and take seriously any mentions of their office or policies. Working with your local newspaper can present an excellent opportunity to increase the public’s and policymaker’s awareness about the impact of brain aneurysms on their community and how Ellie’s Law would address this.

(6) Invite Your Member to Speak at a Local Event
Members appreciate receiving invitations to speak at local events, including policy roundtables and listening sessions, and charity events, because it allows them to interact with constituents in a less formal setting. We encourage you to invite your Members to attend (and speak at) local events, including fun-runs/walks, galas, and other brain aneurysm awareness events. We recommend emailing an invitation to the district scheduler at least 6 weeks in advance. The request should include the date, time, location, likely attendees (including any business partners or media), and a proposed agenda. Most importantly, emphasize you are a constituent and make the case as to why the member should want to attend by including specific details about the local community. If the member has made any positive statements or actions related to Ellie’s Law, express your thanks and highlight this in the email. Be sure to include the names of any possible additional speakers in case the member has objections.

If the Member is not available, we encourage you to invite their district staff to attend the event, as this is a great opportunity to build a personal relationship with the office.



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