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Urge Congress to Participate in American Stroke Month!

Earlier this month, there was big news for stroke patients on Medicare. On April 1st, President Obama signed the Protecting Access to Medicare Act. Included in the law is a provision that extends the Medicare therapy caps exceptions process for the next 12 months. This means for the next year, stroke survivors on Medicare can rest assured that they will have access to the crucial rehabilitation needed to help in their recovery. Now decisions around therapy won’t be hampered by an arbitrary cap or coverage limits.

Even though this was a victory for stroke patients on Medicare, it is disappointing that these therapy caps were not permanently repealed and that stroke survivors might find their crucial therapy in jeopardy again a year from now.

Congress' failure to repeal the therapy caps shows how important it is that the voices of stroke survivors be heard on Capitol Hill. Luckily, with May being American Stroke Month, this is the perfect time to speak up in support of stroke patients. During those 31 days, we will be promoting awareness about stroke among lawmakers and how together we can make it preventable, treatable, and beatable. 

However, you do not have to wait until then to get your legislators involved!

Send a letter to your member of Congress today and tell them to make American Stroke Month a priority!

Your representative in Congress can participate in three simple ways to highlight the importance of American Stroke Month. They include:

  • Attend the American Stroke Association / National Stroke Association Congressional briefing on May 14th, which will highlight the issues and challenges facing stroke caregivers.

  • Speak on the floor of the House or Senate about the importance of American Stroke Month or highlight the month in a newsletter.

  • Join the Congressional Heart and Stroke Coalition. The Coalition, which is made up of more than 125 Members of the House and Senate, works to raise awareness of the seriousness of cardiovascular diseases and acts as a resource center on heart and stroke issues.

May is the month to focus our legislators on stroke awareness. Urge your legislator to participate in American Stroke Month today!

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Calling All You're the Cure Superheroes!

Calling all You’re the Cure SUPERHEORES! (Yes, that means YOU!)

Forget Captain America and Wonder Woman.  When it comes to fighting heart disease and stroke, You’re the Cure advocates are the superheroes we’ll choose to have on our side every time!  That’s because no super powers or special gadgets can ever amount to the power of thousands of dedicated people who give their time and share their stories to bring about positive change.    

Wondering if the contacts you make to our nation’s lawmakers really qualify you for superhero status?  Just think about this... Everyday, heart & stroke patients are benefiting from life-saving research you supported.  Everyday, students are eating healthier meals in schools because of you.  Everyday, people have access to AEDs in more public places because you pushed for change.  And everyday, our neighbors are breathing smoke-free air because you cared enough to speak-up.  Because of you, we are saving lives and helping more Americans live healthier- and in our book, that makes you a superhero! 

Later this month is National Superhero Day (April 28th) and rather than celebrate fictional characters from comic books and action movies, we want to celebrate YOU!  So, we’re asking ALL of our You’re the Cure advocates to share a picture, showing us your best superhero pose.  Or you can share a picture of the special heart or stroke superhero in your life who inspires you to be an advocate. 

It’s easy to join in the fun!  Just snap a picture of yourself giving us your best superhero pose (bonus points for creativity!) and share the picture on Instagram, Facebook, or Twitter using the hashtag #ytcHero.  Throughout the month, we’ll share some of great pictures on our social media accounts to showcase our powerful You’re the Cure community.     

We can’t wait to see what you come up with!

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Share Your Story: Sophia Foster

Sophia Foster Kansas

Cassandra is thankful for a simple screening test for newborns, not yet required in Kansas, as it saved her baby’s life.  That screening, called a pulse oximetry test, found the oxygen level in her first child, Sophia, to be dangerously low. It was the first step to discovering that Sophia had numerous critical heart defects that would put her in surgery.

20 weeks into Cassandras pregnancy, her daughter was identified as having heart issues.  After several tests, nobody could give them a clear answer.  Once Sophia was born, she was given a pulse oximetry test which identified her oxygen saturation level at 70%.  They quickly followed up with a heart echocardiogram test and found she was suffering from several critical heart defects.

If they did not perform a pulse ox test on Sophia, she could have died.  The pulse ox test assists in identifying CHDs that can easily be missed as some of them may not show up until days or weeks later when surgery is less effective and the damage may be irreparable.
 
In October of 2013, Sophia had surgery to repair her heart.  She is 13 months old now and healthy.  Cassandra wants to see to it that every newborn in Kansas gets the same test Sophia received.  She continues to assist and support the work the American Heart Association is doing in their fight to get every newborn screened.

 

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Share Your Story: Linda Dickson

Linda Dickson Missouri

As we travel down the road of life, we can choose the paths we would like to take but sometimes a path is chosen for us.  This path can look very scary at first but then you realize it has made your life even more meaningful.  The events on March 22, 2007 chose a path that I would have never chosen for myself but now 7 years later, I make it a way of life!!!
  
It started with a headache that just kept getting worse.  I had it through the day and I remember telling everyone I just wanted to lay down.  Luckily, I didn’t give up on my “important” meeting.  I arrived a little early so I could get my daughters who were 8 and 6 years old settled before the meeting started. I remember getting my 6 year old a piece of paper and that is it……..

I was told I passed out at the table!  Luckily, Dana, an ER nurse and Diane, also a nurse, were there at the meeting.  They noticed me and both knew I needed help!  The kids were rushed out.  Dana and Diane started CPR.  911 was called.  Dana and Diane continued CPR for about 8 to 9 minutes.   When EMS arrived, they tried to defibrillate me once and nothing happened.  They tried a second time and my heart started but I still was not breathing for myself.  It was estimated that I was without a heart beat for about 10 minutes.

 When I arrived at the ER, they worked to get me breathing again.  Once I was stabilized, I was transported to another hospital.  I was in a coma for about 24 hours and it was determined that I had myocarditis, an inflammation of your heart muscle.  It was likely caused by a virus.  My husband and family were told by the doctors that they couldn’t give them any idea of what was going to happen.  They just had to give me time. 

Once I woke up, I was having trouble with my short term memory not fun for my family.  Every time I woke up, I asked the SAME question over and over.  It was determined after much testing of my heart, that I needed an ICD, an implantable cardiac defibrillator.  Four days after my sudden cardiac arrest, I was taken to have my ICD implanted on the left side of my chest.  With this new addition to me, life was going to change a bit.  I have to watch magnets, metal detectors, and those anti-theft devices in entrances to stores, just to name a few things. 
Just five days after my sudden cardiac arrest, I was discharged from the hospital to start my new life!!!  The physical scars healed.  My heart functions came back to normal.  After 6 weeks, I could raise my left arm above my shoulder and I could finally drive again!!!  But emotionally, I was still struggling and even sometime still struggle with what happened!
 
I have found that my work with the American Heart Association, GO Red, and the Sudden Cardiac Arrest Association has made everything make more sense.  I have a new journey in life and I love it!  My family has embraced the path with me and we all find it so fulfilling!  With your support, we can change the 7% sudden cardiac arrest survival rate, and you can read about more wonderful stories like mine…..

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Share Your Story: Ardon Brandt

Ardon Brandt Iowa

I was a first-time mom-to-be.  I was 11 days overdue.  I was impatient.  I wanted to meet my baby.

After 34 hours of labor my nurse came racing into my room. She was moving the baby monitor around and getting agitated; she could not find my baby’s heartbeat. The OB was called in and I was being prepped for an emergency c-section. When Ardon arrived, he was rushed out of the room. No one would tell me what was wrong. Once I was moved out of OR and into my room, a team of doctors came in to give us the news. We were told that they used “every resource they had” just to stabilize him. Ardon was facing a constant threat of cardiac and respiratory arrest and if he took even half a step back, they did not think they could save him. Ardon could not encounter any stimulation – not sight, not sound, not touch.  Stimulation could elevate his heart rate and send him into immediate cardiac arrest.  So, the question was – do they risk keeping him and hoping he stays stable or do they risk a helicopter flight to get him to a higher-level and more experienced hospital?  It was decided to call in the flight-for-life and transfer him immediately.

When a nurse asked me what she could do for me, I answered, “Please just take care of my baby.” Unknown to me at the time, it was then that my mother decided to take care of her baby. She pulled my doctor into the hallway and told her, “If want to do something for that mother, you will get her in to see her baby because she may never see him alive!”  The nursery was cleared out and my bed was rolled in so I could see my son before the helicopter arrived.

Two hours later Ardon was ready for lift-off. The EMT that would travel with Ardon came into my room.  When asked what to expect she responded, “Judging from his condition, if he survives the helicopter trip he will be in NICU for 3 to 6 months”.  My world collapsed in on itself; terror ripped through me like I had never felt before.  I heard the “IF”.  I might lose my baby.

I was transported by ambulance to join Ardon.  He handled the flight well and I was able to visit him in NICU the next morning. Whenever I visited, I would stand behind him so that he would not see my cry.  I wanted him to see a mom that was strong, not scared. One of his nurses asked me why I didn’t talk to him. I did not think I could without risking sending him into arrest.  She explained to me that low, quiet sounds were safe and that he needed to know I was there for him. I leaned over and whispered, “Hello, Sunshine…”  He opened his eyes and he tried to find me! What a moment that was!  We were then taught how to carefully place our hand on his head while watching his vital signs and, should he “crash”, how to remove our hand in a way so as to minimize stimulation. When Ardon was one week old I was able to hold him for the first time. It was absolutely amazing!  When Ardon was 3 weeks old we were able to bring him home.

During my follow-up appointment I learned what happened the day he was born.  There was a blood clot in the umbilical cord that cut him off from his oxygen supply and sent him into distress.  So many things went wrong when he was born but the vitally important things went right.  Without the research and professional training and education provided by the American Heart Association, Ardon would not have lived more than a few minutes.

Ardon is now a strong, healthy 17-year old and will forever be My Sunshine.

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A Heartfelt Thanks

Each year, we like to pause and give thanks during National Volunteer Week (April 6th-12th) for the amazing contributions of volunteers like you.  We know you have a choice when deciding which organization to dedicate your time and talents to and we’re honored you’ve chosen to contribute to the American Heart Association’s mission.  Over the years, I’ve had the pleasure of getting to meet many You’re the Cure advocates in person to say ‘thanks’, but since getting together isn’t always possible, I wanted to share this special video highlighting the progress you’ve made possible.

(Please visit the site to view this video) 

You’ll see we are making strides to create smoke-free communities across the country, develop the next generation of life-savers trained in CPR, and ensure all students have healthy meal choices in schools.  The effort you’ve made to contact your lawmakers, share your story, and spread the word through your social networks have led to those successes and more. In fact, in just the last eight months, You’re the Cure advocates have helped contacted local, state, and federal lawmakers more than 140,000 times and it’s these messages that can lead to policy wins.

So take a moment to pat yourself on the back and enjoy a job well done!  I look forward to continuing our efforts to pursue policy changes that will help build healthier communities and healthier lives for all Americans. We couldn’t do it without you – thanks!

- Clarissa

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7 Million Enrolled: An Affordable Care Act Update

Accessible, affordable health care is critical to preventing and treating heart disease and stroke.  That makes the progress made during this first 6-month open enrollment period of the Health Insurance Marketplace something to recognize.      

When open enrollment closed on March 31st, 7.5 million Americans had enrolled in a health care plan according to the Department of Health and Human Services.  In addition, millions of Americans were able to gain coverage through the Children’s Health Insurance Program (CHIP) and the Medicaid expansion that took place in 26 states and the District of Columbia.

Even with open-enrollment closed, there are still some lingering questions consumers may have and we’re here to help:

What if I tried to enroll by March 31, but didn’t finish in time?

If you tried to enroll in health coverage through the Marketplace by March 31 but didn’t finish on time, you may still be able to get 2014 coverage- but you need to act quickly.  You must finish your enrollment by April 15 to get coverage for 2014. If you enroll by April 15, your coverage will begin May 1.  Learn more here.

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When is the next open enrollment period? 

It’s not too early to think about your next opportunity to gain or alter your coverage. The next enrollment period will begin on November 15th, 2014 and end on February 15th, 2015.  You can sign-up for email updates at www.healthcare.gov.  This will, once again, be a critical time to help educate the millions of Americans who remain uninsured about their health care options and help them enroll in a plan that meets their needs and budget. 

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Are there any exceptions to the open enrollment period deadlines? 

There are ‘qualifying life events’ that enable you to buy coverage outside of the standard enrollment period, such as:

  • Having a baby or adopting, or
  • Getting married or divorced, or
  • Moving to a new state, or
  • Losing your employer based coverage.

Additionally, those who qualify can apply for the Children’s Health Insurance Program (CHIP) or Medicaid at any point in the year.  There is no open enrollment period for these programs.  Also, if you own or operate a small business, you can begin offering coverage to your employees at any time.   

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New CDC Study on Poison Centers and E-cigarettes Reinforces Need for FDA Regulation

Washington, D.C., April 3, 2014 American Heart Association CEO Nancy Brown made the following comments on the study released today by the Centers for Disease Control and Prevention (CDC) on the rise in e-cigarette calls to poison centers:

"The CDC’s latest study on e-cigarettes is in one word – disturbing. The rapid increase in calls to poison control centers for exposure to e-cigarette liquid, particularly among young children, points to a serious problem. New data such as this cries out for Food and Drug Administration oversight of these products.

With more than 51 percent of all reported e-cigarette poisonings involving children under the age of five, immediate action is needed to keep children from ingesting or coming into contact with these products. Manufacturers should disclose the ingredients and dangers of these products in clear and detailed warning labels, limit their use of fruit and candy flavors that appeal to children, and restrict the marketing and sale of e-cigarettes to youth.

E-cigarettes need to be regulated, researched and monitored closely. The American Heart Association urges the FDA to take prompt action to protect the public’s health and bring these products under its jurisdiction."

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Relief for stroke patients on Medicare

There is some big news to report from Washington, D.C. Over the past several months, thousands of You’re the Cure advocates like you have sent over 8,500 messages to Capitol Hill urging their lawmakers to stop potentially devastating caps on outpatient therapy for stroke survivors on Medicare. This week Congress listened and took action on these therapy caps!

On Monday, the Senate followed the House by passing the Protecting Access to Medicare Act. Included in this bill, which the President signed into law on Tuesday, is a provision that extends the Medicare therapy caps exceptions process for the next 12 months. This means for the next year, stroke survivors on Medicare can rest assured that they will have access to the crucial rehabilitation needed to help in their recovery. Now decisions around therapy won’t be hampered by an arbitrary cap or coverage limits.

Even though this is a victory for stroke patients on Medicare, we were disappointed that these therapy caps were not permanently repealed. Although this 12 month reprieve is welcomed, it is unfortunate that stroke survivors might find their crucial therapy in jeopardy again a year from now. We will continue fighting for a repeal of the caps and will no doubt need your help in the future. But for the moment, we should all be proud of this accomplishment.

Thank you for the actions you take to ensure the priorities of heart and stroke patients are kept in front of our nation’s decision-makers.

You make a difference.

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Knowing Which Medical Products Are Best for Each Person -- It Just Makes Sense

Check out American Heart Association CEO Nancy Brown's latest Huffington Post blog post about the need to address health disparities in clinical trials.  

"Turn on your television at any point during the day or night and you will likely run across an ad for a prescription drug, along with a disclaimer about possible side effects. It seems only logical that those side effects are a possibility for anyone who takes the medicine, regardless of gender, race or age.

Unfortunately, that logic is wrong.

Studies of drugs and medical devices do not always report what effects these treatments may have on women, minorities or the elderly. Worse yet, those effects are not always investigated, as members of those populations are often underrepresented in trials -- despite the fact gender, race and age makes people more prone to certain diseases."  Read the full article on the Huff Post Healthy Living Blog. 

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