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Stroke Advocacy Network Newsletter


Stroke Research Threatened Again

Photo of a microscopeRight now, Congress is once again debating the future of our nation’s investment in medical research activities, including stroke-related research conducted by the National Institutes of Neurological Disorders and Stroke (NINDS). Past NINDS’ work has revolutionized stroke care, including providing the basic research leading to the only treatment for acute ischemic stroke, tPA.

Despite these successes, the agency’s budget has already been severely cut in ongoing budget clashes on Capitol Hill. Another round of budget talks is underway and the stroke community must speak up to make sure Congress preserves our nation’s ability to discover the next major advancement in stroke diagnosis, treatment or recovery.

We’ve given you two ways to make your voice heard. You can send a message to your representatives in Congress asking them to support funding for critical medical research activities. Even if you’ve sent messages about this issue to your members of Congress in the past, they need to hear it again as they make decisions about what federal spending measures to vote for or against.

You can also participate in our advocate call-in day on Sept. 18. On that day, we’re joining forces with more than 140 other organizations to send the same pro-research message to Congress. This effort is part of the Rally for Medical Research and includes face-to-face meetings with members of Congress. You can support this in-person effort from the comfort of your own home by calling, posting or tweeting your members of Congress with the same pro-research message. We’ve provided you with everything you’ll need to deliver this message to Capitol Hill, including a script for your phone calls.

With these actions, you can join us in making the stroke community’s voice heard on Capitol Hill. Congress needs to hear how important stroke-related medical research is to their constituents. Help deliver the message to Congress now and on Sept. 18 and help make sure the incidence and impact of stroke is reduced for future generations!

Advocacy 101

webinar.pngWe’re holding a training session to teach you how to effectively advocate on stroke-related policies with your elected officials. We invite you to participate in this free training session on Sept. 24 at 1 p.m. EDT and become an advocate in the fight to reduce the incidence and impact of stroke!

Why does this matter? Your elected officials make laws that impact all aspects of stroke diagnosis, treatment and rehabilitation. The more they know about the needs and challenges of the stroke community, the more they’ll be able to help change policies to support us. Here are just some examples:

  • Congress provides (or doesn’t provide) funding for medical research that can produce the next major advancement in stroke care;
  • Congress also decides each year whether stroke survivors on Medicare will have access to enough therapy services to recover to their fullest potential;
  • State legislators are responsible for laws that can provide or hinder specialized stroke care getting to rural or medically underserved areas of your state; and
  • State legislators can enact laws that make it easier for emergency medical personnel to diagnose stroke and get patients to facilities with specialized stroke care when they do.

Your voice can make a tremendous difference in this process. Believe it or not, citizens have an enormous influence on elected officials. You just need to know how to be most effective when communicating with them. Join us for this online educational program, Advocacy 101, on Sept. 24 at 1 p.m. EDT. We’ll show you how to tell your stroke story to your elected officials and make a difference for the entire stroke community in the process. Register for this webinarSpace is limited so reserve your space by registering today.

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Stroke Research Threatened

Advocacy 101

New Health Insurance Options

Support Group Programs

State Legislatures

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Have You Been Impacted By Medicare Therapy Caps?

Have you experienced problems this year getting therapy services covered by Medicare? Tell us about it. We’re working to make sure those services are available to stroke survivors. Your story can help us do that. Send us your story today.

Advocacy and Social Media

Follow your congressional and state legislators on social media. Find out how.

Make Our Voice Louder

Please give today and support our efforts.

Donate today

• • • • • • • •

Shop the online store

Tell a Friend

Share on Facebook


Health Insurance Marketplaces Open on Oct. 1

Doctor with patient photoThe Health Insurance Marketplaces (also known as exchanges) created in the Affordable Care Act (ACA or “Obamacare”) will open for enrollment on Oct. 1. The opening of these exchanges means that new health insurance options may be available to you.

Each state will have its own health insurance exchange. The health insurance plans offered by the exchanges are private plans—offered by private health insurance companies, not the government. All the plans are required to cover the same set of core benefits and the exchange allows you to compare different plans’ premiums, copays, benefits and other features so you can chose a plan that’s right for you. Having a pre-existing health condition won’t keep you from getting coverage. The insurance companies offering plans on the exchanges cannot deny you coverage or charge you more if you have a medical condition.

Also, financial assistance may be available to help you pay the cost of buying health insurance coverage. The federal government is offering this financial support, or “premium subsidies,” to some people who are struggling to afford health insurance coverage.

We’ll be unveiling a new webpage in the coming weeks about the Affordable Care Act and these exchanges. This tool will include links to each state’s health insurance exchange, a premium subsidy calculator and other information to help you understand how the law could help you. More information on this great resource is coming soon!

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Stroke Support Groups Programs-in-a-box

Stroke Support Group logoNational Stroke Association’s programs-in-a-box are designed for use by stroke support groups. The first offering, Afib-in-a-box, features a DVD with three webinars: Explaining Atrial fibrillation, Living With Afib; and an ask-the-expert presentation. Also included are a number of brochures explaining the connection between Afib and stroke, a discussion guide, Act FAST magnets and wallet cards.

The second program is about spasticity. It also features a DVD with the presentation, Getting a Grip on Spasticity, a discussion guide, brochures and other related articles. Spasticity-in-a-box is being packaged in an expandable vinyl folder with multiple pockets which will serve as a program library.

To order the programs, call 1-800-STROKES (787-6537) or email supportgroups@stroke.org.

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Make a Difference in Your State

state license plate collageThe Stroke Advocacy Network’s State Advocacy Action Center helps stroke survivors, caregivers, family members and the healthcare professionals who care for them share their experiences, challenges and needs with legislators in statehouses across the country. Sharing this information helps these lawmakers have a better understanding of how changes in public policies can help prevent strokes, improve the lives of people impacted by stroke and support the healthcare professionals who care for stroke survivors. So far in 2013, the 9,800 members of the Stroke Advocacy Network have taken action on 97 stroke-related bills and resolutions in 33 states and the District of Columbia. Some of the issues we’ve advocated for include:

  • Connecting more stroke patients with specialized stroke care in multiple states;
  • Supporting a statewide network of caregiver resources in California;
  • Encouraging Hawaii, Indiana, Illinois, Pennsylvania and West Virginia to provide more services to stroke survivors during their recovery;
  • Supporting the establishment of a commission to study the needs of people with aphasia in Massachusetts; and
  • Expanding biomedical research funding in Connecticut to cover stroke-related research.

Of the 97 stroke-related bills and resolutions we took action on in 2013, 23 have become law and another 25 are still pending (could possibly become law). These new stroke-related laws will make a difference for stroke patients, survivors and caregivers in Arizona, Colorado, Connecticut, Hawaii, Idaho, Illinois, Indiana, Maryland, Mississippi, Missouri, Montana, Nevada, New Mexico, North Carolina, Vermont and Wyoming.

While most state legislatures have adjourned for the year, seven states and the District of Columbia are still in session. If you live in one of these states, you can still make a difference! Click on your state below to make your voice heard on stroke-related legislation still under consideration. If your state isn’t on the list, visit the State Advocacy Action Center to find out whether your state legislature talked about stroke in their 2013 legislative session. If you’re not a member of the Stroke Advocacy Network, join us today and make a difference in your community and beyond!

California | District of Columbia | Massachusetts | Michigan | New Jersey
Ohio | Pennsylvania | Wisconsin

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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.