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Spring 2011
FEATURE

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The First-of-Its-Kind Network Supports Stroke Policy Agenda

Story By Irene Middleman Thomas

My life is consumed with two passions—number one, raising my three children and number two, doing anything and everything I can to help others who have survived a stroke,”  says Lenice Hogan, a member of National Stroke Association’s steering committee for the Stroke Advocacy Network, which launched in 2010.  “I will work as long and as hard as I can until the day comes that not one more person suffers a stroke,”  she declares.

Hogan, a three-time stroke survivor (the last and strongest was five years ago at age 39) is just one example of the enthusiasm and energy encompassed by the Stroke Advocacy Network’s seven-member steering committee that supports stroke policy issues.

The purpose of the Stroke Advocacy Network is to speak out on issues that will make a positive impact on the care and quality of life for stroke survivors and their families. Through survivor and caregiver surveys and expert-led strategic planning sessions, National Stroke Association’s Stroke Advocacy Network has created a policy agenda to frame all of its activities. The agenda, refined by the steering committee, works to enlist the support of governmental decision makers to:

  • Improve access to stroke care.
  • 
Enhance standards of care delivery and coverage.
  • 
Expand the support available to stroke survivors who return to work and school.

The steering committee is made up of people of various ages, professions and stroke experiences from throughout the U.S. Their experiences with stroke have empowered them to donate their time, effort and empathy to help others learn more about stroke and to make a difference through political advocacy. The network is designed to engage decision makers at all levels of government to improve access to and delivery of stroke care and to improve the overall quality of life of stroke survivors as well as their caregivers and families.

“The formation of the Stroke Advocacy Network is the most recent example in a long history of organizational commitment to supporting the seven million stroke survivors and their caregivers in the U.S.,”  says Jim Baranski, CEO of National Stroke Association.

“With an aging baby boomer population and healthcare reform at the forefront of the current congressional agenda, the time is perfect for our organization to engage in a strategic advocacy effort. Research shows that individuals have a powerful voice when speaking to legislators—even more influential than lobbyists. We want to do everything we can to keep the diverse array of stroke survivor issues bright on legislators’ radar screens,”  says Baranski.

One steering committee member is Eric Sarno, 39, who suffered a stroke at 36 years old. A veteran of over one hundred triathlons (including three Ironman races) Sarno didn’t know much about strokes when he had his.  “I definitely did not think I was at risk for having a stroke, but now I know that anyone can be at risk,”  he says.

Sarno, a senior sales representative for an international biotech company that makes oncology medicine, speaks publicly in his home state of Wisconsin about strokes.  “I was at a point in my recovery to be able to articulate some of what I have been through and I wanted to help others. So I offered to help National Stroke Association and they asked me to sit on the steering committee.” 

Although he does have some residual cognitive and visual/spatial aftereffects from his 2007 stroke, Sarno is fortunate to be back in his career. He participates in the steering committee’s monthly conference calls and plans to attend the legislative Lobby Day meeting in Washington D.C. scheduled for summer 2011. The event gives the opportunity for key advocates to participate in a face-to-face advocacy  “boot camp”  and visit legislators on Capitol Hill.

 5 Things You Can Do Today to Make a Difference

The Stroke Advocacy Network Action Center at stroke.org/actioncenter provides access to the Advocacy Toolkit and other resources to help you become an informed and influential advocate. Visit the Action Center today to help you get started on the following five steps to effective advocacy:

1. Join the Stroke Advocacy Network

Sign up for the Stroke Advocacy Network at stroke.org/actioncenter. You’ll receive email advocacy tips, invitations to participate in advocacy training webinars, policy updates and timely prompts to reach out to legislators.

2. Learn About Your Government

Understanding how government works and which legislators are working on the issues that are important to you is a critical piece to becoming an informed and effective advocate.

3. 
Share Your Views with Legislators—Write, Call or Visit

Reach out and build relationships with your legislators. Keeping their fingers on the  “pulse of the people”  is a top priority for legislators and their staffs. The communications that matter most are from their own constituents.

4. Vote

The U.S. was built on the premise that self government is a natural right of every citizen. Exercise your right to vote in all local and federal elections.

5. Speak up

Talk to your peers, colleagues, family, friends, strangers and the media about stroke and how it has specifically affected you. Share why you are passionate about working with the Stroke Advocacy Network and ask directly for support of your cause.

“National Stroke Association is very excited to bring together a group of inspired and committed stroke advocates to receive training on advocacy and to apply that training on Capitol Hill,”  says Baranski.

He continues,  “Lobby Day will be a great opportunity to empower advocates to share their personal stories in a way that can make a big difference for all stroke survivors and their families. Most people, including our elected leaders, know what a stroke is. However, they may not realize that stroke will touch as many as 795,000 individuals and their families in the U.S. this year alone, and that it can affect anyone regardless of age, gender or race. They also may not know that there is hope after stroke. We want our advocates to give a hopeful face to stroke and to effectively discuss issues that will be hot on the Congressional agenda at the time of the Lobby Day.”

“Legislative change is needed to provide appropriate care to individuals who have survived a stroke,”  explains another steering committee member, Loretta M. McLaughlin, past CEO of Magee Rehabilitation. McLaughlin has been involved in stroke and disability awareness and advocacy programs, specifically related to barriers to Medicare reimbursement.

“On the acute care side, there is no requirement that someone having a stroke should be taken to a stroke center. Most EMT protocols require that patients not defined as trauma patients be taken to the closest hospital, regardless of that hospital’s capability to treat the patient. This needs to change,”  McLaughlin adds.

McLaughlin is excited about the steering committee’s goals and direction. She says the most important tasks so far are to set up priorities to make systemic changes and to create a cohesive message spanning acute care, post-acute care and community integration, particularly job reentry. 

After being featured in a StrokeSmart article, Hogan was contacted by others from around the nation. She explains how she got involved with stroke advocacy.  “As I spoke with more and more people, it became clear to me that the younger 
survivors were really not being served well with regard to getting their lives back, dealing with depression and the anxiety of having another stroke—all while trying to raise a family and 
return to work.” 

Hogan started a local support group that was soon sponsored by the University of Nebraska Medical Center Neurology Department. Hogan also writes a blog for the Omaha World Herald’s livewellnebraska.com and coordinates several media events to help raise awareness of stroke issues. Hogan’s story, titled  “Inspirational Stroke Survivor,”  is presented on youtube.com

Steering committee member and stroke survivor, Karen Dionne, reports about how the group has affected her from the first conference call meeting.  “One comment had a huge impact on me. A member said that this group will be the voice representing the seven million other stroke survivors around the country. That is so powerful. I’m honored to be a part of such a network helping survivors.”  Dionne is a stroke activist who co-founded an online support group called Reclaiming Ourselves, for young adult stroke survivors and their families.

The steering committee has been busy developing an hour-long webinar and online action center (stroke.org/advocate and stroke.org/actioncenter). The group has come up with a meaty list of program objectives and components. Its target audiences are stroke survivors, caregivers, family members, support group leaders and members, healthcare professionals and National Stroke Association staff and board members.

Hogan says,  “One of the biggest values that this steering committee adds initially is providing a place where survivors and caregivers can get information and begin to educate themselves on what can be done to help make the system work better. One very important part of helping survivors receive proper care is to educate those policy decision makers about the issues and problems that we face to help us remove any and all roadblocks to receiving proper care and rehabilitation. This group is the first of its kind to connect, organize and advocate for better stroke awareness to improve the policies that surround stroke care. I am thrilled to be able to be a part of such a wonderful grassroots movement.”

Other members of the Stroke Advocacy Network steering committee include:

  • 
Victoria Dienst, mother of a pediatric stroke survivor and a member of National Stroke Association’s Executive Board
  • 
Judi Johnson, stroke survivor, Nurse Consultant, HealthQuest and a member of National Stroke Association’s Rehabilitation and Recovery Advisory Board
  • 
Rich Zorowitz, MD, Chief of Department of Physical Medicine and Rehabilitation, Johns Hopkins Bayview Medical Center and a member of National Stroke Association’s Rehabilitation and Recovery Advisory Board.

Irene Middleman Thomas is a freelance contributor to many publications. She  writes about health, travel, lifestyles and business, among other topics.

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