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Stroke Advocacy Network Newsletter


JUNE 2013


Virtual Lobby Days Begins June 17

Virtual Lobby Days begin June 17Virtual Lobby Days begins June 17! Every year, the Stroke Advocacy Network hosts this virtual event to encourage people to reach out to their members of Congress about stroke-related legislation and tell their stroke stories. Your participation in this event will help strengthen the power of the stroke community’s message on Capitol Hill.

Last year, nearly 1,300 Stroke Advocacy Network members sent more than 4,400 messages to Congress. Those messages came from every state in the U.S. and were delivered to nearly every House and Senate office on Capitol Hill. Help us replicate that success this year by taking action and sharing your story with your members of Congress between Monday, June 17 and Friday, June 28.

This year, we’re asking Congress to:

  • Remove obstacles to accessing Medicare therapy services;
  • Support funding for stroke-related medical research; and
  • Support legislation that would help stroke survivors return to work.

Watch your email inbox for more information about these legislative “asks” and easy ways you can participate in Virtual Lobby Days. We look forward to “seeing” you beginning June 17!


We Educated Congress About Stroke in May

Photo of Dr. Zorowitz

 

Dr. Richard Zorowitz, member of the Stroke Advocacy Network Advisory Board

Last month we went to Capitol Hill to educate members of Congress about stroke, its warning signs and symptoms, stroke rehabilitation and stroke-related medical research. The purpose of this congressional briefing was to raise awareness about stroke in the halls of Congress. Members of Congress make decisions on healthcare policies that impact the entire stroke community. Thus, it’s important they and their staff understand the challenges faced by stroke survivors, caregivers, family members and the healthcare professionals who care for them. Read more about the briefing; find out if your members of Congress participated and how you can thank them; and see how you helped make the event a success.


IN THIS ISSUE

Virtual Lobby Days

Congressional Briefing About Stroke

Senator Mark Kirk’s Stroke Story

State Legislature Watch

Social Networks and Advocacy

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Legislative Resources

The Stroke Advocacy Network has all the resources you need to effectively advocate for the stroke community.

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Tell a friend about the Stroke Advocacy Network and make the stroke community’s voice even louder!

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StrokeSmart magazine 2013 Issue 3 coverSenator Mark Kirk Talks to StrokeSmart® Magazine

One year after a stroke nearly claimed his life, U.S. Senator Mark Kirk (R-IL) climbed the steps of the Capitol Building and returned to work in his Washington, D.C., office. But it wasn’t easy. In an exclusive with StrokeSmart magazine, the senator explains how his “boot camp” rehabilitation regimen helped lead to his dramatic recovery. Read more about Sen. Kirk’s stroke story.

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State Legislature Watch

Massachusetts and Illinois license plates

While some states have finished their work for the 2013 legislative season, others are just getting warmed up. State legislators in Illinois and Massachusetts have recently introduced legislation that could have an impact on the stroke community.

The Illinois legislature acted quickly to pass a resolution related to language impairment. Illinois’ Medicaid program covers augmentative and alternative communication devices, but the coverage does not extend to tablet computers such as iPads or assistive communication applications. This is significant because these applications may be appropriate and less expensive than other devices for some patients. Illinois state legislators recently passed a resolution to create a task force to study whether Medicaid should cover this technology for people with communication challenges, including stroke survivors. How can you support this effort? If you live in Illinois, we’ve made it easy for you to thank your state legislators for supporting this legislation and ensure that stroke survivors who rely on Medicaid have access to this technology for their recovery.

In Massachusetts, state legislators are trying to create a study commission focusing on aphasia. The study commission would determine the prevalence of aphasia in Massachusetts; identify the unmet needs of persons with aphasia; and make recommendations for legislation, programs and resources to meet those needs. This type of legislation is important because stroke is the leading cause of aphasia, an acquired disorder of communication that impairs a person’s ability to use and comprehend language. Aphasia may make it difficult to speak, understand spoken language, read, write, use numbers and do calculations, or use nonverbal gestures. A full recovery from aphasia is possible, but if symptoms persist long enough, then a complete recovery becomes unlikely. If you live in Massachusetts, tell your state legislators to help stroke survivors living with aphasia in your state.

Bills like the ones described above not only help stroke survivors facing communication challenges, but they also raise awareness among policymakers about the challenges stroke survivors face in their daily lives. If you live in Illinois or Massachusetts, please urge your state legislators to support this important legislation today!

State legislatures in several other states are still in session as well. Find out if they’re talking about stroke by choosing your state below.

Arizona | CaliforniaDelaware | District of ColumbiaKansasMaine | Massachusetts | Michigan | New Hampshire | New Jersey | New York | North Carolina | Ohio | Oregon | Pennsylvania | Rhode Island | South Carolina | Texas | Washington | Wisconsin

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Social Networks and Advocacy

graphic of Capitol with social media icons

Social media networks like YouTube, Facebook and Twitter are no longer simply venues for the younger crowd to text others of the younger crowd in an incomprehensible language. In fact, according to a report by the Congressional Management Foundation, nearly two thirds of senior level managers in Congressional offices believe that Facebook is an important tool for understanding constituent perspectives. Some offices even see social media as more critical than email.

Wouldn’t you like to find a quick and easy way to get your message to your legislators’ offices? If your answer is “yes, but I don’t know what to do,” have no fear. Just follow these four simple steps and you’ll be “friending” along with the best of them in no time.

Sign Up

Setting up a profile on any of the “big name” sites like YouTube, Twitter, Facebook or LinkedIn is usually a simple three- or four-step process. In posting your profile, remember that other advocates, prospective employers and your professional colleagues might be taking a look. In fact, it’s standard practice now to check these sites before entering into any business or even legislative transactions. So, this probably isn’t the place for your “look at this crazy stunt I pulled” photos from college.

Start Following Others

Find your elected officials on each of these channels and start following them (or “liking” them, etc.). Not only is it fun to see what they post, you’ll also learn a great deal about what they’re working on and what interests them. In addition, you can use a resource like LinkedIn to find others in the policymakers’ audience who might have useful connections. Once you know that, you’ll be able to frame your advocacy messages in a way that resonates with them. And don’t forget to connect with National Stroke Association’s social network sites as well. We’re on YouTube, Facebook and Twitter.

Care and Feeding: Review, Refresh and Reinvigorate Your Pages Regularly

You don’t really have to reinvent the wheel in order to provide an ongoing flow of fresh information. You can simply “share” or “retweet” any messages that you receive from others and like. For example, share and retweet Stroke Advocacy Network action alerts or compelling Faces of Stroke stories. Post a photo of your next patient advocacy group meeting, your caregiver or your local medical facility. In other words, live your life and post occasional updates online.

Engage

The true value behind social media is that these sites can (and should) be used to engage others in your advocacy efforts. You can connect with others through a variety of tactics, including:

  • Using the “find a friend” feature to make a request to connect online with anyone who you think might be interested in policy actions that impact stroke survivors.
  • Posting comments on the walls, blogs and other public posting areas of existing groups and potential advocates. Be careful to post useful, substantive information that entices people back to your group (as opposed to promoting without providing value).
  • Commenting positively on postings from legislators and their staff. Be sure to thank them whenever they show support for stroke survivors.
  • Including a link to your social media pages as part of your email signature to drive traffic.
  • Posting a question on your wall or blog that invites feedback from others.

Social networks are not only fun, but they’re also a great way to get your advocacy message out. By connecting with like-minded people online, you may just create that critical mass necessary to make a difference for your community, for your country or for the world at large. Inspired? Then get online and get advocating!

For additional tips on how to follow your congressional and state legislators on social media, watch this short video.


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Supported by Allergan, Inc., Boehringer Ingelheim Pharmaceuticals, Bristol-Myers Squibb, Genentech, Inc.,
H. Lundbeck A/S, Janssen Pharmaceutical, Inc. and Pfizer, Inc.