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Stroke Advocacy Network eNews - July 2015

IN THIS ISSUE: A Busy Time on Capitol Hill! | Members Of Congress Are Coming Soon To A District Near You

A Busy Time on Capitol Hill!

in-dc-img.jpg21st Century Cures Act (H.R. 6) is legislation that creates an exciting new program to track neurological diseases like stroke. Similar programs have already played a key role in identifying and delivering critical treatments for stroke patients, such as less invasive procedures to treat stroke (like stenting) and the benefits of locomotor therapy programs to speed the path to recovery. These are just a few among hundreds of other benefits. Through H.R. 6, scientists and doctors will be able to dramatically increase these kinds of direct services to survivors. Bottom line: this program would result in faster and more effective cures. As a result of the coalition’s efforts, the 21st Century Cures had sweeping bipartisan support, with 377 members voting in favor and only 44 voting against. Congress is finally getting the message about the importance of supporting stroke survivors. But our work is not done yet!

NIH Research Increases

In addition to passing the 21st Century Cures Act, legislators have also shown their support for medical research through the budget process. Stroke survivor champions in both the House and Senate are seeking to increase funding for several agencies and programs important to stroke survivors. These programs include the National Institutes of Health (NIH), the National Institute of Neurological Disorders and Stroke (NINDS), and a brain-mapping project called the Brain Research through Advanced Innovative Technologies (BRAIN) Initiative. Specifically, Congressional champions have called for up to $2 billion in extra funding for NIH, an $85 million increase for NINDS, and $85 million in additional funding for the BRAIN Initiative, which would more than double last year’s level.

As the budget process moves forward, we face a difficult battle to maintain and increase Congressional support for NIH’s work in funding cures and treatments for stroke. Through our efforts at the Stroke Advocacy Network, we hope to overcome the partisanship in Congress that may reduce the support for increases and, perhaps, even cut the existing funding levels. Any cuts could impact a wide-range of programs, such as research into the critical role immediate MRI tests can play in diagnosing and reducing the severity of stroke and a better understanding of the genetic factors associated with stroke.

Increasing the Speed of Diagnosing and Treating Those Experiencing a Stroke: Action Needed! Finally, Senator Kirk (IL) – a stroke survivor himself – recently introduced the Furthering Access to Stroke Telemedicine (FAST) Act (S. 1465). The legislation would dramatically increase a patient’s access to telestroke technology, a means of remotely diagnosing and monitoring stroke through electronic devices. In the House of Representatives, Republican Congressman Griffiths (VA-09) and Democratic Congresswoman Beatty (OH-3) have introduced similar legislation. Telestroke technology can connect patients having a stroke with stroke specialists around the country who can provide quicker, more accurate diagnoses and treatment recommendations. You can take action on this bill at our Federal Action Alert center now.

Members of Congress Are Coming Soon to a District Near You

Find out what is happening in your state

Legislators are slated to be back in their communities in August. The August recess offers an excellent opportunity for stroke survivors, caregivers, family members and the healthcare professionals who care for them to connect with policymakers in a meaningful way. Your members of Congress make decisions that impact the entire stroke community. They need to hear your stroke story so they understand the challenges of stroke before they vote on stroke-related issues.

One of the best ways to connect with your members of Congress is at a “town hall” meeting. Members of Congress and their staff arrange these community-wide discussions to learn more from their constituents about the issues that impact them directly. It’s one easy way to be heard and to influence the policy debate in Washington, D.C. To make sure they continue to fight for stroke survivors, we will be asking you to take some easy, yet meaningful, action. Be on the lookout for emails detailing how to engage throughout August, and let us know about any action you do take by posting on social media using the hashtag #StopStroke.

How can I find out when and where a town hall meeting will take place? Finding out when a member of Congress is coming to your area is easy. You can call their district office and ask. The Stroke Advocacy Network can help you find the phone number for the district office nearest to you. You can also sign up for e-newsletters produced and distributed by your members of Congress. They often provide information about upcoming meetings in your community. Do you use social media sites? Your members of Congress probably do too. Follow them on social media outlets such as Facebook and Twitter. They may post their upcoming meeting schedules.

Some members of Congress conduct virtual town hall meetings by telephone or online meetings through sites like Facebook. Joining these discussions is easy and at a minimum, will help you learn more about your legislator’s point of view. They’re also a fun way to engage in the legislative process and advocate for the stroke community from the comfort of your home.

What happens during a town hall meeting? Although the format varies, typically the member of Congress makes some opening remarks and introduces his or her staff. There may also be local leaders in attendance who wish to make remarks. Then the floor is opened up to comments from the audience—that’s where you come in!

Do I need to know anything before I go? Before you attend a town hall meeting, take a moment to learn a little about the member of Congress hosting the event. You can learn about bills they’ve introduced and the specifics of their district at www.congress.gov. If you don’t know who represents you, visit our Find Your Legislators webpage to find out.

What should I say to my legislator or their staff? Just tell your story. Talk to legislators about your day-to-day challenges, such as medical costs, returning to work or school, access to care, caring for a loved one at home or all of the above. Ask them to support legislative initiatives that would help you face and overcome these challenges. You can also read about the issues the Stroke Advocacy Network is following in Congress and talk to your legislators about them. Don’t worry if you don’t know every detail about the issues. If they ask questions you can’t answer, tell them you’ll follow up with them, then contact the Stroke Advocacy Network staff and we’ll help you provide those answers. You can also offer yourself as a resource on stroke-related issues and challenges. Legislators are always eager to find individuals who can serve as a resource on important issues.

What if I don’t want to talk in public? Even if you find talking in front of people intimidating, you should still attend a town hall meeting. Arriving a couple of minutes early or staying a few minutes late allows you to introduce yourself to the legislator or staff person, mention your interest and let them know you’d like to follow up. There’s no doubt you’ll find them gracious and attentive. Remember, they want to hear from you (and for you to like them)! The purpose of a town hall meeting is for them to hear your views and figure out how they can help.

You have a unique role to play in the policy process and that is to connect the very strange things that happen in Washington, D.C., to the real world. You do this by telling your story—a story that only you can tell. After all, if you’ve been courageous enough to survive a stroke or to care for those who have, you have more than enough courage to face your members of Congress.

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