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Rachel Henry, Massachusetts

Eleven years ago, at the age of 30, Rachel suffered a hemorrhagic stroke in her doctor's office during a routine checkup. Thankfully, her doctor knew what was happening and Rachel was able to receive immediate lifesaving care. It was a long road, but she always says that stroke changed her physically, emotionally, and spiritually.  For years, Rachel asked, "Why me?  Why did I have a stroke?"  Now, it is "Why not me?  What can I do now?  Who can I help?” She had her stroke and was saved and since then has been working to prevent strokes, treat survivors and ensure a healthier future. Rachel says “I am here to help the AHA/ASA accomplish their mission.  It is my mission too.  I speak for stroke survivors who can't.  I talk to people who don't understand.”

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Aphasia Advocates Back Improved Stroke Care Bills

We know that stroke is the No. 4 cause of death and the leading cause of disability in the U.S. A stroke can have various communication effects, one of which is aphasia. Stroke is the most common cause of aphasia, which is a language disorder that affects the ability to communicate. Aphasia does not affect intelligence. Stroke survivors remain mentally alert, even though their speech may be jumbled, fragmented or impossible to understand. People with aphasia are often frustrated and confused because they can’t speak as well or understand things the way they did before their stroke. They may act differently because of changes in their brain. Imagine looking at the headlines of the morning newspaper and not being able to recognize the words. Or think about trying to say "put the car in the garage" and it comes out "put the train in the house" or "widdle tee car ung sender plissen." Thousands of alert, intelligent men and women are suddenly plunged into a world of jumbled communication because of aphasia. Our legislators have the opportunity to help people currently living with aphasia and try to ensure that when someone suffers a stroke they are treated quickly so they have a chance to reverse disabilities like aphasia associated with stroke.

I was honored to be a part of the Aphasia Day at the State House on June 26th. We, at the American Stroke Association, joined with the hundreds of you living with aphasia and caregivers. We joined with them to advocate for two bills that can help improve stroke care and provide resources to survivors living with aphasia. We took the opportunity to thank the State Repreentatives for passing House Bill #4162 which establishes a special commission to investigate and study the programs and resources necessary to meet the unmet needs of persons with aphasia and their families and asked the Senate to act quickly on this legialatino to ensure that we are dedicating time to determine what resources are needed for people who are living with aphasia.

In addition, we asked legislators to help to move critical legislation that establishes a Stroke System of Care in the Commonwealth. With improved systems of care in Massachusetts, we can save the lives of many residents who suffer a stroke. We urge legislators to pass Senate Bill #2075 that will designate the best medical centers to treat stroke and ensure that care is delivered as promptly as possible. Each year, thousands of lives are lost to stroke largely due to a lack of coordination between emergency services, health professionals and treatment facilities. We can address the problem by passing this legislation that would close gaps in the continuum of care from prevention to recovery. Coordinated systems of care can save lives by providing stroke patients with seamless transitions from one stage of care to the next. I believe that this bill that would designate the best medical centers to treat stroke and establish an official state registry must be a priority for all members of the legislature.

I know sometimes you think about aphasia or stroke, what can I really do? "I am only human", but you can do so much, your voice can make a huge difference. Just being here today sharing your story and showing legislators what aphasia is, is making a difference. You are being an advocate today. You Advocacy is creating an environment that motivates people to act and helps increases visibility of your issue. Your advocacy can be powerful tool for producing social change where we live and work and if you don’t – who will? 

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Tedy Tackles the Legislature

On June 18th, Tedy Bruschi came to the State House to talk about important Stroke Legislation. He has been a dedicated advocate for us since suffering his stroke. He spoke passionately to the legislators about how he had a "stroke system of care" in place because he was a three time super bowl champion and a member of the New England Patriots. Shouldn't everyone get the same level of high quality care that Tedy got? He thinks so and I agree! We have been fighting for a number of years to improve the stroke system of care in Massachusetts and we are close. The Senate included language in their budget to create a tiered system of care and we are now fighting to keep it in the final budget. Tedy met with key legislative leaders to ensure that this can happen.

Tedy shared his story and the story of all the people he meets that have not been treated quickly, he talked about why time matters and he spoke about how because he went to the right hospital and was given the right treatment and diagnosis he was able to be a father, a husband and even a football player again. He talked about all the titles he has had over the years, super bowl champion, pro-bowler, but the one he says he is most proud of...Stroke Survivor. I know many other amazing survivors who would agree.

It is time for the legislators to act; it is time for Massachusetts who is a leader in health care with their world-class hospitals to be a leader in providing high quality stroke care. Will you help us?

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Boston Teacher is Saved by Heroes in her School!

When Joan Eacmen, a teacher at Roxbury’s O’Bryant School of Math & Science, collapsed in front of her classroom in March from cardiac arrest, students and staff took action. Their quick thinking and combined efforts to call for help, administer CPR and use the school’s AED are what saved Joan's life. On June 4th, we were able to recognize these heart savers as part of National CPR & AED Awareness Week. Members of the school community including students; Zi Liu, Nakeo Murray, and Railin Castro; school nurse, Carrie Bell Peace and assistant principal Bettie Nolan, are credited with saving Eacmen’s life on March 31, 2014. Recognizing their teacher was in need of immediate medical help after collapsing in the midst of instruction, the students took charge, clearing the area and summoning their school nurse and assistant principal who then performed CPR and used an AED until Boston EMS arrived.

When I think of what a heart saver is I think its someone who acts quickly in the face of a shocking and traumatic event like a sudden cardiac arrest. The students and staff who jumped into action and recognized that their teacher needed help are most certainly heart savers and are the examples to showing the importance of knowing how to respond in the event of cardiac emergency as a team!

National CPR & AED Awareness Week, celebrated annually during June 1-7, highlights how lives can be saved by learning CPR and how to use an AED. Each year, more than 420,000 out-of-hospital cardiac arrests occur in the United States. When a person has a cardiac arrest, survival depends on immediately getting CPR from someone nearby, which if performed immediately, can double or triple a victim’s chance of survival. Unfortunately, statistics show that most Americans feel helpless to act during a cardiac emergency because they don’t know how to administer CPR or they’re afraid of hurting the victim.

Both Boston EMS and the physicians at Brigham and Woman’s hospital said that if immediate CPR and an AED were not used, Joan would not be alive toady. Because Boston Public Schools made a commitment to protect the community by ensuring that AEDs are available at all times in school facilities and that school personnel and students have the opportunity to learn the lifesaving skill of CPR, Joan was able to thank the students, staff and the school for saving her life!

Boston Public Schools started their commitment to strengthening the chain of survival in 2002 when the first AED was placed at Boston Latin School and in 2006 when CPR training was introduced to school staff and students. We continue to work with schools across Massachusetts to encourage them to teach students CPR, a move that could save thousands of more lives, just like Joan's!

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1 Million New Lifesavers Will be in Our Communities Every Year, But Why Not in Massachusetts?

More than one million high school students a year will be trained in CPR because of state laws requiring the lifesaving skill as a graduation requirement and work done by the American Heart Association’s CPR in Schools efforts. As a result of 16 states, Oklahoma being the latest addition, across the country now requiring CPR for graduation, all one million students that graduate annually in these states will have been taught CPR. This means one million new qualified lifesavers will be added to our communities each and every year. The states of Alabama, Arkansas, Idaho, Iowa, Georgia, Maryland, Minnesota, Mississippi, North Carolina, Oklahoma, Rhode Island, Texas, Tennessee, Virginia, Vermont and Washington now have laws or regulations on the books which require, prior to graduating from high school, all students to be trained in quality psychomotor skill based CPR. I wish Massachusetts was part of this list and I know with your help we can.

Over 420,000 people have cardiac arrest outside of a hospital every year, and only about 10 percent survive, most likely because they don’t receive timely CPR. Given right away, CPR doubles or triples survival rates. Teaching students CPR could save thousands of lives by filling our community with lifesavers—those trained to give sudden cardiac arrest victims the immediate help they need to survive until EMTs arrive. Sudden cardiac arrest can happen any place, at any time. If you suffer sudden cardiac arrest, your best chance at survival is receiving bystander CPR until EMTs arrive. But most do not. That’s a reality that has to change, starting today. Teaching students CPR before they graduate will now put millions of qualified lifesavers on our streets every year. Everyone benefits from having more lifesavers in our community. Learn about this important milestone at http://bit.ly/U0nYwC.

If you want to join with us and help your school district teach the lifesaving skill of CPR to their students. If you want to join, you can email me at Allyson.perron@heart.org to get started!

 

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Volunteer Named a Unsung Heroine of Massachusetts

I am always so excited when our volunteers and advocates are recognized for their hard work! Diane Pickles was named by the Massachusetts Commission on the Status of Women (MCSW) as an Unsung Heroine. The MCSW is an independent state agency that was legislatively created in 1998 to advance woman of the Commonwealth to full equality in all areas of life and promote their rights and opportunities. This was the 11th annual Unsung Heroine event to highlight woman who are performing unheralded acts of public leadership and volunteerism in our communities.

Diane has been a dedicated and tireless advocate for heart disease and stroke awareness and prevention for more than 18 years. She was inspired to take action after her son Jake was born with a life-threatening congenital heart defect. He had his first open heart surgery at just three days old, the second at six months and his third when he was two years old. Jake was diagnosed early and received excellent care and has happily just finished his first year of college. For the past two decades, Diane has been active with the AHA and has advocated on behalf of issues of health care access, insurance coverage, congenital heart, AEDs and CPR, tobacco and stroke. She was a driving force behind lobbying the Massachusetts legislature to pass An Act Relative to Newborn Pulse Oximetry Screenings for Newborns for Congenital Heart Defects in March 2014.I truly believe that without Diane's perseverance this bill might not have gotten done! Diane was also recently named on our 2014 Go Red for Woman Boston Spokesperson and is the Vice Chair of the MA Advocacy Advisory Committee.

I want to thank Senator Kathleen O'Connor Ives (D-Newburyport) for recognizing Diane's passion and dedication and nominating her to be an Unsung Heroine. I know we at the AHA truly believe that Diane demonstrates what an unsung heroine is! I was so proud to be part of her being recognized and I look forward to the next great advocacy victory we can achieve!

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State of the Air in the Commonwealth

The American Lung Association’s “State of the Air 2014” report was released yesterday and it shows that all eight counties in Massachusetts with particle pollution monitors cut year-round particle pollution (soot) levels compared to the 2013 report and the Boston metro area had its lowest year-round levels of particle pollution to date. This is great news for cardiovascular disease, but there is still work to be done, because at the same time, five Massachusetts counties experienced more unhealthy days of high ozone (smog) while six experienced fewer days. And while the Boston metro area’s ranking on the list of most polluted cities for ozone improved from 68th in 2013 to tied for 69th in 2014, actual ozone levels worsened.

Particle pollution, called fine particulate matter or PM, is a deadly cocktail of ash, soot, diesel exhaust, chemicals, metals and aerosols that can spike dangerously for hours to weeks on end. The body's natural defenses, coughing and sneezing, fail to keep these microscopic particles from burrowing deep within the lungs, triggering serious problems such as asthma and heart attacks, strokes, lung cancer and even early death. Much like ozone pollution is likened to sunburn on the lungs, exposure to particle pollution has been compared to rubbing sandpaper on the lungs.

State of the Air 2014 report found that more than more than 147 million people – more than half of all Americans- live in counties that have unhealthy levels of either ozone or particle pollution. Safeguards are necessary to protect the health of the millions of people living in counties with dangerous levels of either ozone or particle pollution that can cause wheezing and coughing, asthma attacks, heart attacks, and premature death. Those at greatest risk from air pollution include infants, children, older adults, anyone with lung diseases like asthma, people with heart disease or diabetes, people with low incomes and anyone who works or exercises outdoors. There is still work to be done and we look forward to working with the American Lung Association on improving the air everyone breaths!

 

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We Need to Come Together to End Stroke in Massachusetts

May is stroke month, which makes it the perfect time to ask our legislators to act quickly on critical legislation that would require high quality of care for stroke patients in the Commonwealth.

Stroke is the nation's No. 4 killer and a leading cause of long-term disability, every year, about 700,000 Americans suffer a stroke, and 160,000 of them die. Today, 5.7 million Americans are stroke survivors, and as many as 30 percent of them are permanently disabled, requiring extensive and costly care. Death and disability from stroke are projected to nearly double by 2032. A large share of the direct cost is met by public payers such as Medicare and Medicaid.

The development of stroke systems of care, including the establishment of a primary stroke center, can significantly increase the proportion of patients who receive improved stroke care. Dedicated stroke units can reduce a patient’s risk of death by 40%.

This is what we are asking for in Massachusetts, which doesn't seem that complicated! With your help we can work to make Massachusetts a leader in of stroke. We need to ensure that our primary stroke service hospitals are delivering the care that they have promised to do. When we make sure that patients are getting to the hospital quickly after having a stroke and we need to make sure that the hospitals are in fact delivering the care that they are expected to as a primary stroke service hospital.

Will you help us? Will you share your story about the importance of quality of care for stroke patients? Will you join with us to help improve care and outcomes? We know that Together We Can End Stroke!

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Kristina Hill - Stroke Hero

Kristina Hill was only 13 when she suffered her stroke. She had classic stroke signs and symptoms and was rushed to her local hospital not long after the first onset of those symptoms, but because she was so young, the hospital did not think it was a stroke. She waited for a long time for a diagnosis and suffered some deficits because she was not diagnosed quickly. Kristina fought back and become a advocate for stroke, for herself and for all the stroke survivors that had no voice.

She is now 18 and is back playing hockey and being the normal high school kid. She is looking at college for next year and has shared her story countless ways, including testifying at the State House, at Together to End Stroke Lobby Day, at schools for Jumps and Hoops for Heart events and in the media. She is truly a stroke hero!

 

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Complete Streets Are Almost a Reality in the Commonwealth

At the End of April Governor Patrick signed the Transportation Bond Bill into law, which authorizes $50 million in funding for cities and towns through a new Complete Streets Certification Program over the next five years! The Complete Streets Certification program will make it safer and easier to walk, bike, and use public transit across the Commonwealth.

This is a great victory and we were proud to be part of this legislative success as a member of the Act FRESH Campaign along with other great partners representing community health, planning, public transit, walking, and biking advocates, and municipal leaders representing cities and towns across the State.  

The fight is not over yet, we still need your help. We will need to push hard to ensure the program is funded and implemented successfully We will be asking for your continued support d to ensure that this program truly makes a difference in the lives of Massachusetts residents. 

 

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