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Advocacy Events

Congressional Briefing (May 2014)

Virtual Lobby Days (June 2013)

Congressional Briefing (May 2013)

BRAIN Initiative Announcement (April 2013)

Rally for Medical Research (April 2013)

World Stroke Congress (October 2012)

Congressional Briefing (September 2012)

Virtual Lobby Days (June 2012)

Congressional Briefing (May 2012)

Lobby Day in Washington, D.C. (June 2011)

Virtual Lobby Days (June 2011)

Congressional Briefing (May 2014)

An individual has a stroke, but that stroke impacts the entire family, and preventing stroke is the best way to reduce its impact. We brought those messages to Capitol Hill during National Stroke Awareness Month by co-hosting a briefing about caregivers and stroke with the American Heart/Stroke Association.

The briefing, titled Caregivers and Stroke Survivors: Addressing the Financial and Emotional Costs, focused on awareness about stroke and the substantial emotional, physical and financial strain placed on caregivers in the stroke community. The presenters included:

  • Brendan E. Conroy, MD, FAAPM&R, Medical Director, Stroke Recovery Program and Chief Medical Information Officer for Medstar National Rehabilitation Hospital
  • Gail Gibson Hunt, President and CEO of the National Alliance for Caregiving
  • Robin and Van Williams, a caregiver and stroke survivor

Dr. Conroy spoke about stroke prevention—knowing the warning signs and symptoms of stroke and acting FAST when it occurs. Ms. Gibson shared facts about the cost of family caregiving and how legislation in Congress could help reduce the financial toll to caregivers. This legislation, the Americans Giving Care to Elders (AGE) Act, would provide a $1,200 tax credit for caregiving expenses for family members providing long-term care to elderly relatives affected by a range of conditions, including stroke. Ms. Williams ended our session by taking about her family’s experience with stroke and caregiving.

Finally, we left a list of actions individual members of Congress could take to help the stroke community. This list included supporting legislation to:

  • Provide a tax credit for caregiving expenses;
  • Repeal the caps on Medicare outpatient therapy services;
  • Preserve stroke-related medical research funding and fund the BRAIN Initiative;
  • Help stroke survivors return-to-work; and
  • Join a stroke- or neurology-related congressional member organization.

Virtual Lobby Days (June 2013)

Virtual Lobby Days 2013Our third annual Virtual Lobby Days event was a success! This event allowed our advocates to make their voice heard in Washington, D.C. on multiple issues that are important to the stroke community. During the last two weeks in June 2013, Stroke Advocacy Network members from all 50 states, the District of Columbia, Puerto Rico and Guam sent more than 6,500 messages to their representatives in Congress!

Those messages asked members of Congress to support the stroke community by:

Thank you to all of our advocates who participated in this event and made the stroke community’s voice heard loudly in the halls of Congress. Your efforts made a difference on these issues in 2013!

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Congressional Briefing (May 2013)

Speakers at the 2013 Congressional Briefing

Top Photo: Dr. Koroshetz, speaking, Jim Baranski, seated
Middle photo: Dr. Richard Zorowitz
Bottom photo: Edna Boyle-Lewicki

On May 29, 2013, National Stroke Association went to Capitol Hill to educate members of Congress on stroke, the warning signs and symptoms, stroke rehabilitation and stroke-related medical research. Several experts spoke at the briefing, including:

  • Jim Baranski, chief executive officer of National Stroke AssociationMr. Baranski opened the briefing and talked about National Stroke Awareness Month and the warning signs and symptoms of stroke.
  • Coral Cosway, director of policy advocacy for National Stroke Association—Ms. Cosway summarized things that members of Congress can do to improve the lives of stroke survivors, caregivers and family members, support the healthcare providers who care for them and help support research activities that have the potential to reduce the incidence and impact of stroke in the future.
  • Michael Harold from the office of Representative Earl Blumenauer (D-OR)—Mr. Harold spoke about Rep. Blumenauer’s leadership of the Congressional Neurosciences Caucus. The mission of the caucus is to “build awareness of the intrinsic role brain research plays in understanding ourselves and our society, to help communicate the progress and the benefits of this research and to help inform federal policy.”
  • Dr. Walter Koroshetz, deputy director of the National Institutes of Neurological Disorders and Stroke (NINDS)Dr. Koroshetz talked about what causes a stroke, the prevalence of stroke and how NINDS’ medical research advances stroke prevention, treatment and recovery.
  • Dr. Richard Zorowitz, associate professor of physical medicine and rehabilitation at the John Hopkins University School of Medicine and chairman, Department of Physical Medicine and Rehabilitation at the John Hopkins Bayview Medical Center—Dr. Zorowitz talked about rehabilitation for stroke survivors, the current “best practices” in stroke rehabilitation and where the field of rehabilitation is going in the future.
  • Edna Boyle-Lewicki, a stroke survivor and Stroke Advocacy Network memberMs. Boyle-Lewicki told the story of her hemorrhagic stroke and the rare warning sign that indicated that stroke: a severe headache.

National Stroke Association would like to extend thanks to Drs. Koroshetz and Zorowitz, Mr. Harold and Ms. Boyle-Lewicki for sharing their knowledge and experience with us. We would also like to thank the office of Sen. Mark Kirk (R-IL) for their help facilitating the use of the hearing room and other logistical issues.

We also want to thank our Stroke Advocacy Network members for their role in making this event successful. In order to encourage attendance at this important briefing, we asked our members to send a message to their members of Congress. The message urged legislators to attend the briefing or make sure their healthcare staff member attended. Stroke Advocacy Network members sent 5,100 of these messages and as a result, 26 congressional offices participated.

Here’s a list of the offices that sent representatives to the briefing. If you’re represented by one or more of these members of Congress, please send them a note thanking them for participating! To find out if any of these members of Congress represent you, visit the Stroke Advocacy Network’s Find Your Legislators webpage.

Rep. Andy Barr (R-KY)
Rep. Joyce Beatty (D-OH)
Rep. Earl Blumenauer (D-OR)
Rep. Kathy Castor (D-FL)
Rep. Suzan DelBene (D-WA)
Rep. Sean Duffy (R-WI)
Rep. Renee Ellmers (R-NC)
Rep. Tulsi Gabbard (D-HI)
Rep. Tim Griffin (R-AR)
Rep. Cathy McMorris Rodgers (R-WA)
Rep. Thomas Petri (R-WI)
Rep. Brad Wenstrup (R-OH)

Sen. Tammy Baldwin (D-WI)
Sen. Robert Casey (D-PA)
Sen. Roy Blunt (R-MO)
Sen. Orrin Hatch (R-UT)
Sen. Mazie Hirono (D-HI)
Sen. Johnny Isakson (R-GA)
Sen. Tim Johnson (D-SD)
Sen. Angus King (I-ME)
Sen. Mark Kirk (R-IL)
Sen. Lisa Murkowski (R-AK)
Sen. Pat Roberts (R-KS)
Sen. John Thune (R-SD)
Sen. Elizabeth Warren (D-MA)
Sen. Sheldon Whitehouse (D-RI)

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BRAIN Initiative Announcement (April 2013)

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“As humans, we can identify galaxies light years away, we can study particles smaller than an atom. But we still haven’t unlocked the mystery of the three pounds of matter that sits between our ears. So, as a result, we’re still unable to cure diseases like Alzheimer’s or autism, or fully reverse the effects of a stroke.”

—President Obama,
April 2, 2013

National Stroke Association was honored to be invited to the White House for President Obama’s announcement of his proposed BRAIN Initiative. Jim Baranski, National Stroke Association’s chief executive officer, was one of about 100 guests at the event, where President Obama unveiled his proposal to launch a “space race-style” effort to understand the human brain.

The Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative would “accelerate the development and application of new technologies that will enable researchers to … show how individual brain cells and complex neural circuits interact at the speed of thought.” This dramatically expanded understanding of the brain will give researchers the knowledge they need to develop new ways to treat, cure and prevent brain disorders.

National Stroke Association’s mission is to reduce the incidence and impact of stroke. We can’t think of any better way to do that than to provide the researchers, scientists, healthcare professionals and others who work in the area of stroke research with a map of the human brain. This bold initiative has the potential to spur major advancements in stroke prevention, diagnosis, treatment and recovery.

Even though the president proposed the BRAIN Initiative, it’ll be up to Congress to fund it during their budget process. The Stroke Advocacy Network will follow the progress of this funding effort. Join the network and help us advocate for the BRAIN Initiative so this transformative research effort becomes a reality!

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Rally for Medical Research (April 2013)

Rally for Medical Research photo

Photo by Eric Sarno, Stroke Advocacy Network advisory board member

In 2013, federal agencies that conduct vital medical research have endured deep funding cuts. These cuts are already requiring the doctors, researchers and scientists at these agencies to scale back, delay or cancel medical research projects. Additionally, current federal law will force these agencies to cut their budgets even further over the next 10 years!

The agency that conducts most of our nation’s basic stroke-related medical research is the National Institute of Neurological Disorders and Stroke (NINDS). NINDS is responsible for major advancements in stroke diagnosis, treatment and rehabilitation, including the only FDA-approved treatment for acute stroke care.

In response to these drastic funding cuts to NINDS and other federal research programs, National Stroke Association joined more than 200 organizations to rally in Washington, D.C., against these cuts. A member of the Stroke Advocacy Network’s advisory board, Eric Sarno, was in Washington, D.C., and attended the rally in person. Other organizations participating included other healthcare nonprofits, universities, healthcare facilities, research institutions, private companies and others. Our message was clear: Preserve funding for programs that produce important advancements, cures and treatments for medical illnesses.

The Stroke Advocacy Network will continue to follow this issue. Join the network and help us advocate against these funding cuts to ensure that future stroke patients and survivors have access to advancements in stroke prevention, diagnosis, treatment and rehabilitation. You can also contact your members of Congress and urge them to support funding for stroke-related and other medical research activities.

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World Stroke Congress (October 2012)

Judi Johnson at the World Stroke Congress

The Stroke Advocacy Network was honored to present in the poster session of the 8th World Stroke Congress in Brasilia, Brazil, in October. This event brought together healthcare professionals to collaborate, learn new skills and learn about advancements in stroke prevention, management and rehabilitation. Judi Johnson, who serves as a member of the Stroke Advocacy Network’s advisory board, attended the event and presented our poster.

National Stroke Association would like to thank Judi for taking on this additional role at the event!

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Congressional Briefing (September 2012)

On September 11, 2012, National Stroke Association partnered with WomenHeart to host a congressional briefing on atrial fibrillation (Afib) and stroke in women in honor of Atrial Fibrillation Awareness Month in September. The briefing focused on the increased risk of Afib and stroke in women because more women have strokes than men do and Afib is a major stroke risk factor. Afib is responsible for 15 to 20 percent of ischemic strokes and increases one’s risk of suffering an ischemic stroke by five times.

In order to encourage attendance at this important briefing, National Stroke Association encouraged Stroke Advocacy Network members to send a message to their members of Congress. This message urged them to attend the briefing or make sure their healthcare staff member attended. You sent more than 1,500 letters to your legislators, and 19 offices participated in the briefing!

Representative Lois Capps (D-CA) attended in person and spoke to attendees. Rep. Capps has been a strong and consistent supporter of the stroke community. The other 18 members of Congress (listed below) sent staff members to the briefing. If you’re represented by one or more of them, please send them a note thanking them for participating! To find out if any of these members of Congress represent you, visit the Stroke Advocacy Network’s Find Your Legislators webpage.

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Rep. Sandy Adams (R-FL)
Rep. Dan Benishek (R-MI)
Sen. Richard Blumenthal (D-CT)
Sen. Bob Casey (D-PA)
Rep. Judy Chu (D-CA)
Rep. Jerry Costello (D-IL)
Rep. Rick Crawford (R-AR)
Rep. John Dingell (D-MI)
Rep. Donna Edwards (D-MD)

Rep. Mike Fitzpatrick (R-PA)
Rep. Chris Gibson (R-NY)
Rep. Richard Hanna (R-NY)
Rep. Jim Himes (D-CT)
Sen. John Kerry (D-MA)
Rep. Tom Latham (R-IA)
Sen. Jack Reed (D-RI)
Rep. Niki Tsongas (D-MA)
Rep. Joe Wilson (R-SC)

Virtual Lobby Days (June 2012)

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The Stroke Advocacy Network conducted its second annual Virtual Lobby Days during two weeks in June. The purpose of this event was to enable network members to communicate with their members of Congress about four stroke-related bills and resolutions pending before the House or Senate.

More than 1,270 Stroke Advocacy Network members took part, sending more than 4,450 messages to Congress. Those messages came from every state in the U.S. and made their way into almost every office on Capitol Hill.

Thank you to everyone who participated in Virtual Lobby Days and sent messages to their members of Congress about important stroke issues. You are appreciated!

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Congressional Briefing (May 2012)

Photo of Dr. Koroshetz

Dr. Walter Koroshetz speaking at the congressional briefing.

On May 15, 2012, National Stroke Association hosted a congressional briefing with the American Stroke Association. Our organizations went to Capitol Hill to educate members of Congress and their staffs about stroke and the importance of the stroke-related medical research conducted by the National Institute of Neurological Disorders and Stroke (NINDS).

NINDS, an institute of the National Institutes of Health (NIH), conducts and supports medical research on brain and nervous system disorders, including stroke. The institute’s research has already significantly advanced stroke treatment in a number of ways, focusing on risk factors, genetics and advances in imaging and rehabilitation, among others issues related to stroke diagnosis, treatment and recovery.

At the briefing, congressional staff and other attendees learned about advances in stroke care that have resulted from NINDS research. Presenters also talked about more recent stroke-related research efforts, their outcomes for patient care and how advancing stroke care affects not only the patient, but also the overall healthcare system. Speakers included Dr. Walter Koroshetz, NINDS Deputy Director, physicians who specialize in neurology and rehabilitation medicine, and a stroke survivor who talked about his recovery from stroke.

The Stroke Advocacy Network has been a strong supporter of both NIH and NINDS funding. In 2011, network members took action and sent messages to members of Congress representing 43 states and the District of Columbia, asking them to support federal funding for NIH and NINDS. With the current budget environment on Capitol Hill, funding for these critical medical research agencies will likely be an issue for the Stroke Advocacy Network in the future.

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Lobby Day in Washington, D.C. (June 2011)

Photo of 2011 Lobby Day advocates

The 2011 Lobby Day team from 19 different states

National Stroke Association brought a group of stroke survivors and caregivers to Washington, D.C., in late June to advocate for stroke-related legislation pending before Congress. The purpose of the trip was to ask individual members of Congress to actively support legislation that could help existing and future stroke survivors with their recovery as well as increase stroke prevention activities.

All of the individuals that traveled to Washington, D.C., were stroke survivors or caregivers. They came from 19 different states and represented a variety of experiences with stroke and post-stroke recovery. Most of these individuals had no previous experience talking to their elected officials about legislation, or advocating. To prepare them to advocate, National Stroke Association provided them with a variety of tools and information the day before they went to Capitol Hill.

During this briefing, advocates also talked with congressional staff about the status of the stroke-related legislation they were advocating for—where the bills are in the legislative process, the likelihood of the bills  getting enacted into law and the importance of their advocacy efforts in making that happen.

Lobby Day itself began with a visit from Senator Ben Cardin (MD). Senator Cardin introduced the Senate version of the Medicare Access to Rehabilitation Services Act (S. 829). He talked about why the issue is important to him and how critical it was for the advocates to be there talking to other members of Congress about it.

After hearing from the senator, our advocates headed off to meet with their own members of Congress. Each advocate met with both of their senators and their representative.

National Stroke Association would like to thank our advocates for their time and energy in Washington, D.C. We would also like to thank everyone who posted Facebook messages and Tweeted messages of support during their trip—the advocates were inspired!

» Download a copy of the final report summarizing our 2011 Lobby Day activites here

» Visit the Photo Gallery

 

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Photo of Senator Ben Cardin speaking to our advocates

Senator Ben Cardin (MD) speaking to our advocates

Photo from Lobby Day

Ginny and Lou Ruppe with Sen. Susan Collins (ME)

Virtual Lobby Days (June 2011)

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In addition to the lobby day in Washington, D.C., National Stroke Association’s Stroke Advocacy Network conducted a Virtual Lobby Days event. The purpose of this event was to enable members of the Stroke Advocacy Network to communicate with their members of Congress about the same bills our advocates were talking to them about in Washington, D.C.

The Virtual Lobby Days lasted nine days, and during that time, over 400 Stroke Advocacy Network members took part, sending over 1,200 letters to members of Congress. Those letters came from stroke survivors, caregivers, healthcare professionals and other partners in 45 states and the District of Columbia.

Thank you also to everyone who participated in Virtual Lobby Days and sent letters to their members of Congress about important stroke issues. You are appreciated!

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Event Photo Gallery


2011 Lobby Day
Washington, D.C.

June 22-23, 2011

 

View photo album

Photo of Karen and Mike Dione with staff

Karen and Mike Dione (on right) with staff

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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.

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Stroke and You

National Stroke Association

1-800-STROKES
1-800-787-6537
9707 E. Easter Lane, Suite B
Centennial, CO 80112
info@stroke.org