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Will you help influence scientific research?

We need to hear from consumers like you as the American Heart Association (AHA) and the Patient-Centered Outcomes Research Institute (PCORI) partner together on the future of research. Your experience could lead to the next research study to improve heart disease and stroke treatment.

As an advocate we’ve asked you to speak out for increased funding for medical research and you’ve answered by contacting lawmakers and sharing your personal stories as survivors, caregivers, and loved ones touched by heart and stroke disease. Now we invite you to share your experience, the decisions made in determining your or your loved one’s treatment plans and the factors that influenced those decisions. If we better understand your experience it can help guide the research that will lead to better care tailored to the specific needs of patients.

If you’ve had a heart attack, suffered a stroke, or you know a loved one who has, your unique understanding could help guide research to solve un-met care challenges faced by individuals like you and improve heart and stroke treatment.

Here are the details:

  • We are focused on un-met challenges faced by patients and caregivers like you. 
  • To join this challenge, you’ll be asked to provide a written submission of your first-hand experience after a heart disease or stroke event.
  • The story and description of the concerns you faced and the decisions you made should be personal and not a general case.
  • A team of scientific professionals and patient representatives with expertise in heart disease and stroke will review your story. Learning more about issues and concerns important to your decision-making can help them improve experiences and outcomes for patients in the future.
  • If your submission is chosen, you could win $1,000 and possibly help shape the future of cardiovascular research.
  • All submissions must be received by June 8, 2016.

Please take this important challenge and share your insights. Your story matters. Take the challenge today!

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Weighty Tobacco Issues Brought Before DC Council

The tone was set…as heavy rain pelted against the windows, over 30 members of the DC Tobacco Free Coalition gathered at the John A. Wilson Building on April 28 to discuss a weighty tobacco control agenda. The plan was simple - to march to the DC Council and advocate for fully funding the DC Tobacco Control Program, increasing the tobacco purchase age to 21, restricting smokeless tobacco use in sports venues and treating electronic-cigarettes the same as other tobacco products.  This was to be a pivotal ‘Day at DC Council.’

These dozens of DC residents banded together with the support of the American Heart Association, American Cancer Society Cancer Action Network, and the American Lung Association.  With the meetings set and the facts in hand nothing could dampen the spirit of this group of dedicated health advocates.

As meetings unfolded with Councilmembers, You’re the Cure advocates shared startling statistics:

  •  95% of smokers start before age 21 and 12.5% of DC teens smoke
  • The CDC recommends the District invest $10.7 million to support a comprehensive tobacco control program in the District, which is currently funded at only $1.34 million 
  • 800 District residents die from smoking related illnesses each year
  • 800,000 packs of cigarettes are purchased by DC teens every year

One of the attendees, Neha A. said, “I was at DC Lobby Day because tobacco is a very important issue that effects everyone - users and non-users.  Besides the critical fact that current tobacco control funding is far below ideal, it was important for me to emphasize the impact of tobacco exposure and use on the youth/teenage population as well as dispel myths about electronic cigarettes.”

Day at DC Council was just the start! All You’re the Cure advocates are encouraged to make their voices heard and urge the Council to support tobacco control when they consider the FY17 budget on May 17.  Click here to add your voice!

Hear inspiring messages from advocates on the scene at our Day at DC Council: 

 

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Let's Get Mobile!

We’re keeping up with the times, and now you can advocate by text, in addition to the emails you might be used to. 

You can get on our mobile list and lend your voice to a policy issue at the same time – just be sure you reply to the ‘auto-response’ after you send your first text, and complete the action step!

  • DC:  Text XTOBACCO to 52886 to urge DC Council to fund tobacco cessation
  • MD:  Text CHOICES to 52886 to tell legislators we still want healthy items in state vending machines
  • VA:  Text FRESH to 52886 to bang the drum about the need for better grocery access
  • NC: Text NCYTC to 52886 to urge lawmakers to support healthy food access across the state
  • SC: Text CPRSC to 52886 to thank state leaders for requiring CPR skills to be taught in high schools   

When you text the keyword, we’ll respond right away with your activation link – just click on the link and fill in the fields (you won’t have to do that every time), then tap the SEND EMAIL button. 

It’s an easy way right at your fingertips to make a difference.

Welcome to the new world, us! 

 

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Yolanda Dickerson

Yolanda Dickerson, Mid-Atlantic Affiliate

I am the product of my village.  When I received the AHA Survivor Advocate of the Year award in DC three years ago, I knew it was really not about me. The award is a culmination of those who invested in me and what I’ve learned up to this point. For more than 12 years now I have raised money for heart walks, volunteered for American Heart Association (AHA) in booths at various events, and been a guest speaker to parents, survivors and even AHA staff.  I have helped train other advocates, spoken to countless legislators, and been featured in Public Service Announcements, but these things didn’t start with me.

My advocacy story started with my mother who encouraged all four of her children to not let adversity stop their dreams and to help others along the way.  I learned the power of resolve in the face of limitations from my brother Darrell; of working smart (not hard) from my brother Rodney; and to stay focused on family from both my younger brother Willie and Cousin Charles. My daughter, Ilana, has taught me the benefits of (sometimes) being silly and enjoying the moment.

These lessons have been honed and sharpened by AHA/YTC staff and volunteers through trainings and practice sessions. How could I begin to thank Sloan Garner, Betsy Vetter, Kacie Kennedy all the other AHA/YTC folks who have put time, trust, and support in my success as an advocate and as a person. Every survivor, caretaker, and medical provider I meet leaves their mark and positive influence on my resolve to continue volunteering. I can’t run cross country, but I can effect change that reaches beyond my community one volunteer effort at a time.

 To all those named and unnamed members of my ‘village’ I say thank you and I will continue to honor you by using my abilities to help others.

 Yolanda Dickerson, You’re the Cure Survivor-Volunteer-Advocate

 

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Psst ... We Want To Tell You Something Big!

Throughout the year, we reach out with a "THANK YOU!" message to our advocates because we want you to know that your efforts are making a difference and saving lives.

We appreciate you every moment of every day.  We value those times when you rush through dinner with your family to make to make a council meeting in your community, and when you stand up and share your reasons for supporting an AHA policy. 

It means so much to us when you dedicate your time to State Lobby Day, meeting with legislators to reinforce support for active legislation.  And we can’t forget to thank you for driving to in-district Congressional offices to thank lawmakers for their support on AHA’s federal issues.  When you click to send a letter online it is incredibly valuable to our efforts and we genuinely appreciate your efforts. 

We know you have a choice about how you spend your time.  The fact that you invest in You're the Cure honors us - so this week, National Volunteer Appreciation Week, we honor you. Because YOU are our "why."

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Jennifer & Joel Griffin

Jennifer & Joel Griffin, Virginia

On June 8, 2012, Gwyneth Griffin, a 7th grader at A. G. Wright Middle School, collapsed in cardiac arrest.  Several critical minutes passed before her father, Joel, reached her. CPR had not been initiated. “There was no one else taking care of my daughter, so I had to,” said Joel. Gwyneth’s mother, Jennifer, stated “It was after the results of the MRI, 3 weeks later, that we decided no one should ever have to go through what we were going through. What became evident was the need for CPR training in schools."

While the couple immersed themselves in caring for Gwyneth at the hospital, friends and family were busy back home in Stafford learning CPR. Joel and Jennifer’s daughter, Gwyneth, passed away Monday, July 30, 2012, not from her cardiac arrest, but because CPR was not initiated within the first few minutes. Their home community mobilized, and at least 500 people have become certified in CPR since.

Jennifer and Joel involved themselves in working with the American Heart Association and their legislators to establish legislation that would assure every student was trained in CPR before graduation.  Through their efforts and perseverance, and in honor of their daughter, Gwyneth’s Law was passed in Virginia in the 2013 General Assembly session.  The law has three components: teacher training in CPR, AED availability in schools, and CPR training as a graduation requirement.

Here’s a look at how the Griffin's determination led to success:

(Please visit the site to view this video)

Since passage of the Virginia law, the Griffins have continued to work to help other states accomplish the same goal.  They visited Maryland legislators during the 2014 General Assembly session, and were instrumental in getting a similar law passed there.  Now they are actively working to make it happen in DC schools, including a series of legislator visits, a television interview, and providing testimony before committees They hope their story will help inspire others to support CPR training in schools as well. 

The legacy that Gwyneth leaves behind is one that will save countless lives. Help honor her legacy. This quick video will help you become CPR smart (and might get you dancing too):  https://www.youtube.com/watch?v=0HGpp6mStfY

 

Gwyneth Griffin

 

Special thanks to You’re the Cure advocate/writer Karen Wiggins, LPN, CHWC, for help crafting this story.

 

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AHA President Says: The Science is Clear on Sodium Reduction

Check this out! In a new video, the President of the AHA, Dr. Mark Creager, explains that the science behind sodium reduction is clear. He says that robust evidence has linked excess sodium intake with high blood pressure, which increases the risk of heart attack, stroke, and heart failure. And, he points out that you can do something about it: join AHA’s efforts to demand change in the amounts of sodium in our food supply.

“Nearly 80 percent of the sodium we eat comes from processed, prepackaged, and restaurant foods” says AHA president Dr. Mark Creager. The video shows the 6 foods that contribute the most salt to the American diet: breads & rolls, cold cuts and cured meats, pizza, poultry, soup, and sandwiches."

To see the video, head over to our Sodium Breakup blog!

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Shared Use Still a Challenge

District Sports, a DC non-profit soccer league that started in 2004 and has since grown to more than 5,000 participants, attributes its growth and success to its ability to rely on DC public schools for recreational space.  But they still face challenges in sharing space, as do many sports organizations. 

“Virtually 100 percent of our livelihood depends on our ability to use school spaces,” said Alex Bearman, Executive Director of District Sports. “We’d be able to serve less than half the amount of people we serve now if using DC public schools was not an option.”

Bearman has made a great investment of time working with schools in order to reserve their space. Through an involved process of diligent follow up, relationship building, knowing people at the schools, working with other nonprofits, and developing a reputation, he has made inroads. 

There remains immense room for improvement. District Sports believes maintenance is a critically important aspect of the process that needs to be changed. In the permitting process, community organizations must pay additional fees to cover costs to the schools for security and custodial services after hours, however currently there is no funding for schools to recoup costs for normal wear and tear due to use by a community group.  Requests from organizations may be denied for this reason.  “It’s very difficult to approach a school for a request when my group would degrade the field,” Bearman said.

Some smaller organizations also struggle with the high cost of permit fees and with carrying the required amount of insurance. As a larger, more established organization, Bearman acknowledges that District Sports is in a better position than many to form partnerships that allow them to give back to the schools where they play.  District Sports has even partnered with a smaller volleyball group to help them get a shared use agreement, because this group was struggling to reserve the space on their own. 

A potential policy solution would be to create a fund to help offset these expenses for schools and groups, in addition to the cost of additional security and custodial services.

Without access to ‘playing space’ for many community-based organizations and sports teams, the opportunity for physical activity evaporates. Physical activity has been proven a critical component for a healthy life, especially in controlling obesity.  And the District has uniquely urgent demographics that impact this need, particularly the most underserved Wards.

A District-wide Shared Use policy provides answers. Schools are an ideal place for individuals, organizations, and the community to gather for recreation, either organized or informal. But in many cases, schools do not allow their recreation facilities to be used during non-school hours.  Easing the process of establishing “shared use” or “facility use” agreements would provide much needed access to school recreational facilities. 

Anyone who agrees with this effort can support the cause by sending a constituent’s letter to the DC Council.

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The healthy difference a month can make

March is Nutrition Month, and a perfect time to get more involved with the AHA’s ongoing efforts to promote science-based food and nutrition programs that help reduce cardiovascular disease and stroke.

Every day, we’re seeing new initiatives: to make fruits and vegetables more affordable; to reduce the number of sugar-sweetened beverages that our kids are drinking; and of course, to ensure students are getting the healthiest school meals possible, all with the same goal: to help families across the country lead the healthiest lives they possibly can.

It’s also a great opportunity to lower your sodium intake. The average American consumes more than 3,400 milligrams of sodium per day – more than twice the AHA-recommended amount. Excessive sodium consumption has been shown to lead to elevated blood pressure, which increases the risk of heart disease and stroke. Visit www.heart.org/sodium for tips on to lower your intake and to get heart-healthy recipes.

However you choose to celebrate, Nutrition Month gives us all the chance to take control of our diets; to recommit to eating fresh, healthy foods; and to remember all month long that you’re the cure.

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Larry Calhoun

Larry Calhoun, Mid-Atlantic Affiliate

Several years ago, I completed a 75 mile charity bike ride--a proud achievement and testimony to my level of fitness to complete the ride.  About a week later, I went to bed early not feeling well. I awoke at 3:00 a.m. with a pain in my chest that felt like someone tightening a strap around it and had a VERY rapid heartbeat. I drove myself to the local ER and called Karen, my fiancée, on the way. The ER Doctor determined that I had “atrial fibrillation” (or a-fib). Thus began my journey from a fit man in his 50s to a heart patient overnight. Karen began this journey with me, but also resumed a journey she had previously traveled. Her father had a-fib and had died in 1991 from a stroke caused by this heart disease.

After six months of not being able to control my a-fib, I was referred to a specialist at the Medical University of SC in Charleston to have an ablation preformed.  I intently studied the ablation process, and with my background in computers and engineering, understood the high tech nature of this procedure. My ablation was performed in Charleston in February, 2007.  This eight hour procedure cured me of my a-fib. I have returned to a normal, healthy lifestyle riding my bike and easily walking 18 holes of golf.  My life is back!!

I know that my procedure would not have been possible without intense research into atrial fibrillation, and the work of organizations involved in heart health.  We are especially concerned that future generations do not have to suffer with heart disease, especially atrial fibrillation. 

(Larry, his wife Karen, and their grandchildren - Carmen, Miles, and Isaac - are pictured.) 

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