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Joye Mullis

Joye Mullis, Mid-Atlantic Affiliate

As with all children, my son’s story began well before his birth.  I had a fairly easy pregnancy, tainted by a couple of scares early on, but then all appeared well at my 20-week ultrasound. 

I was healthy.  Baby was healthy.  Life was good.

At 28 weeks, I had a second ultrasound to check on the baby’s growth and that sent my husband, Jeramie, and me into a fast-moving downward spiral of more ultrasounds, stress tests, and worries.  By the time our son, Ethan, was born on March 8th, 2009, I’d had a total of five ultrasounds, all attempting to diagnose what would be two birth defects – one urological in nature and one orthopedic.

“But...” an OB assured us, “...all of his major organs are healthy and strong!”

However, about eight hours after Ethan’s birth we learned that the doctor was not completely right.  After struggling to nurse and being an overall quiet newborn - two major red flags that weren’t apparent to us first-time parents - it was discovered that Ethan had also been born with a critical congenital heart defect known as Pulmonary Atresia.

My post-partum nurse was bringing Ethan back to our room from his newborn screening when she noticed that “he just didn’t look right”.  She wheeled him back into the nursery, hooked him up to a pulse oximeter, and found that his oxygen saturation level was in the mid-60s.  That discovery began a flurry of activity, unbeknownst to us, which culminated in someone coming to our room hours later to tell us about the broken heart of our brand new son.

Ethan was rushed to Duke University Medical Center in Durham, North Carolina where he stayed for a total of nine and a half weeks, and where he underwent his first open-heart surgery at just three days old.  He had a handful of surgeries during that time – one of which was to implant a permanent pacemaker – and he also survived full cardiac and pulmonary arrest.

Over five and a half years, and three open heart surgeries later, Ethan is now thriving! His story is that of strength and resilience.  It's a story about rising above the brokenness and turning something so tragic into something so beautiful. It has taken a lot of work to get Ethan where he is today, and it all began with an observant nurse and a sticky light.  One simple test saved my son’s life and could do the same for countless others.

I’ve been known to say that the diagnosis of Ethan’s heart defect didn’t just break one heart – it broke three.  While Pulse Ox screening can’t take away the heartache of surgeries and complications, it can be the start of a lifetime of success for a baby born with a congenital heart defect.  It was for Ethan, and every baby born in North Carolina deserves that same start. 

   

 

 

 

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The District of Columbia is in a Pickle

The District of Columbia is in a pickle, but the Shared Use of School Property Amendment Act (Bill 20-320) can bring players closer to home. Literally. This bill provides more opportunity for communities to participate in physical activity, by allowing them to more easily use their public school facilities.

Many low-income communities in the District lack the infrastructure to support active lifestyles. This is especially alarming when you compare obesity rates in the District; 44% in Ward 8, compared to 7.5% in Ward 3, for example. Having more access to recreational facilities is a proven way to increase the health of a community. And this bill provides the balance to do so. It creates more environments for physical activity and it limits schools’ exposure to liability, except in cases of gross negligence.

Why is this balance so important? Because the legislation will break down several barriers that prevent the use of school resources. Currently, organizations are required to carry expensive liability insurance and pay high fees to receive a permit to use school grounds because schools are held liable for anything that happens. Few community organizations in the District can afford this level of insurance. Limiting schools’ risk through the Shared Use Bill will allow organizations to need less expensive liability insurance and more community members will be able to participate in physical activity programs.

As Councilmember Tommy Wells states in the July 14th DC Council Committee of the Whole meeting, “it is the balance that we are looking for…we all have had experiences with our local groups unable to access public facilities because of the cost to pay for liability… this is an attempt to manage that.”

The American Heart Association supports Shared Use as a tool to help communities to be more physically active. To advocate for Shared Use and be a member of You’re the Curefollow this link: http://yourethecure.org/aha/advocacy/composeletters.aspx?AlertID=35329

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What Is Your Why?

As you may know, the American Heart Association has kicked off our new "Life is Why" campaign. We know there are many reasons "why" you are passionate, and we’d like to know what the reasons are behind your "why!"

We are running a social media campaign focused on this question throughout the Mid-Atlantic Affiliate, and would love for you to include your story via Facebook (#lifeiswhy), Instagram (@heartmaa) or Twitter (@midatlnticheart). We want to hear and see the motivation for your passion, so please join us by sharing your Why today!

What’s OUR Why?

At the August Mid-Atlantic Affiliate’s All Staff meeting, your Government Relations team was awarded the "Greatest Health Impact" award.  What does this mean? It means that your Government Relations team has most positively impacted the lives of the residents of our Affiliate through our accomplishment of passing public policy (like the Pulse Oximetry bill in North Carolina, or CPR in Schools legislation in Virginia and Maryland) and improving the health of our local communities. 

Cathleen Grzesiek, Vice President of Government Relations for the Mid-Atlantic Affiliate, said "This award is a testament to the hard work and dedication of our government relations directors, grassroots directors, and all of our volunteers over the past year.  Our policy success couldn’t happen without each of them, and together, we are making a huge impact on health across the Mid-Atlantic.  Our team embodies the idea that ‘making a difference is why.’"

We could not have done this without the help of you, our You’re the Cure family!

While at times the policy process can be labored, this just proves that your resolute determination and passion have made a true difference all across the Mid-Atlantic Affiliate.

So today, it is with pleasure that we share that YOU are our why, and we hope that you will share your why with us!

You are invaluable to us, and we are thankful for you and for the great impact you have made on the health of your local and regional communities.

Thank you!

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What is Pediatric Cardiomyopathy?

Did you know that one in every 100,000 children in the U.S. under the age of 18 is diagnosed with a diseased state of the heart known as cardiomyopathy?  While it is a relatively rare condition in kids, it poses serious health risks, making early diagnosis important.  As the heart weakens due to abnormities of the muscle fibers, it loses the ability to pump blood effectively and heart failure or irregular heartbeats (arrhythmias or dysrhythmia) may occur.

That’s why we’re proud to team up with the Children’s Cardiomyopathy Foundation this month- Pediatric Cardiomyopathy Awareness Month- to make more parents aware of this condition (signs and symptoms) and to spread the word about the policy changes we can all support to protect our youngest hearts.
 
As a You’re the Cure advocate, you know how important medical research is to improving the prevention, diagnosis, and treatment of heart disease.  And pediatric cardiomyopathy is no exception.  However, a serious lack of research on this condition leaves many unanswered questions about its causes.  On behalf of all young pediatric cardiomyopathy patients, join us in calling on Congress to prioritize our nation’s investment in medical research.
  
Additionally, we must speak-up to better equip schools to respond quickly to medical emergencies, such as cardiac arrest caused by pediatric cardiomyopathy.  State laws, like the one passed in Massachusetts, require schools to develop emergency medical response plans that can include:

  • A method to establish a rapid communication system linking all parts of the school campus with Emergency Medical Services
  • Protocols for activating EMS and additional emergency personnel in the event of a medical emergency
  • A determination of EMS response time to any location on campus
  • A method for providing training in CPR and First Aid to teachers, athletic coaches, trainers and others – which may include High School students
  • A listing of the location of AEDs and the school personnel trained to use the AED

CPR high school graduation requirements are another important measure to ensure bystanders, particularly in the school setting, are prepared to respond to a cardiac emergency.  19 states have already passed these life-saving laws and we’re on a mission to ensure every student in every state graduates ‘CPR Smart’.
   
With increased awareness and research of pediatric cardiomyopathy and policy changes to ensure communities and schools are able to respond to cardiac emergencies, we can protect more young hearts.

Have you or a loved one been diagnosed with cardiomyopathy?  Join our new Support Network today to connect with others who share the heart condition.   

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Colleen Dudley

Superwoman’s real name is Colleen Dudley. Colleen is a very busy women, but she still finds a way to be active in her DC community, whether it’s at a hospital, as an AHA You’re the Cure Advocate, or as a volunteer.

Colleen received her bachelor’s degree in nursing at Cleveland State University and then worked as a nurse at a Neurology and Stroke Unit in Cleveland. Currently, she is the Stroke Program Coordinator at Medstar Georgetown University Hospital (MGUH) and is working toward her masters in nursing at John Hopkins University.

Despite these demands for her time, she still finds a way to be active in the DC community. Colleen often volunteers with Miriam’s Kitchen, an organization that provides nutritious meals and social services to the homeless. She advocates for nurses in DC and is a member of the American Heart Association’s DC Advocacy Coordinating Committee. Colleen has been an advocate with the AHA for over a year and a half – she became involved with the AHA because of her passion to help people live healthier lives and her experiences as a nurse. Colleen has been a committed and motivated advocate.

One moment that really stands out is when she advocated to implement changes in her own workplace. When she learned about the Workplace Wellness bill in the District (which requires 50 percent of food in government vending machines to meet healthy standards), she decided to implement a similar program in her own workplace. According to Colleen, this was a rewarding experience because she was able to “see the plan come into fruition… and get more people interested in advocacy.”  (Read more about that success HERE!)

Colleen is an advocate with You’re the Cure because she believes that the policies will make a difference in the community. To become an advocate with You’re the Cure please follow this link: http://yourethecure.org/aha/advocacy/register.aspx

 

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Mary Kay Ballasiotes

Mary Kay Ballasiotes, Mid-Atlantic Affiliate

Mary Kay Ballasiotes has been advocating for children for over 15 years.  Her daughter, Michelle had a stroke before she was born and that moment changed both of their lives forever. Mary Kay’s advocacy days started in 2002 in Chicago where she founded the Childhood Stroke & Hemiplegia Connections of Illinois, simply because there was a need for it.  Before long, Mary Kay and her daughter were fixtures at Lobby Day.  At National Lobby Day, May 2006, Mary Kay spoke with the Vice President of the American Stroke Association (ASA) and told him about her daughter having a stroke before birth.  She learned that the VP had never heard of pediatric stroke. From that day on Mary Kay made it her mission to collaborate with the American Heart Association (AHA) and the ASA about pediatric stroke, and to raise awareness about it.

Over the years, Mary Kay and Michelle attended heart walks, lobby days, and were very vocal about pediatric stroke in each state they have lived in: Illinois, Georgia, and now North Carolina. Most recently, Mary Kay co-produced a pediatric stroke awareness video with the American Heart Association/American Stroke Association.  The video was created to raise awareness that strokes can happen in babies, children and even before birth. Join us here  to watch this impactful video.   

Making a difference in people’s lives is the most rewarding element of being part of advocacy.  Mary Kay and Michelle have attended many lobby days over the years, both national and state.  The experience never gets old to Mary Kay.  She loves seeing how her passion and effort can make a difference, and strongly feels that one person can make a difference!  In August 2010, Mary Kay and her family moved to North Carolina where she soon started working with Betsy Vetter, the AHA Director of Government Relations in the Mid-Atlantic Affiliate.  Mary Kay readily admits her love of working with Betsy.  She is one of the reasons Mary Kay is still volunteering and advocating with AHA.  Mary Kay feeds off Betsy’s passion and enthusiasm and feels that Betsy has a gift for working with volunteers and government officials.

Mary Kay is very proud of her daughter Michelle and the hard work that she has been doing right alongside her mother. While back in Chicago in 2007, Michelle was chosen to be one of the 12 “Faces of Cardiovascular Disease.”  Her image was captured on one of many large posters that were circulated around the United States for Heart Walks.  These posters are still being used today.  Because of Mary Kay and Michelle’s hard work, they were both featured in an ABC news article once again shedding light on pediatric stroke. In 2009, Michelle was honored with the Stroke Hero of the Year and received the National Youth Advocate of the Year award.

Mary Kay’s calling is to advocate for children. She feels that things happen for a reason. The stroke that Michelle suffered enabled both Michelle and Mary Kay to reach other families and make a difference in their lives and in the area of pediatric stroke.  Mary Kay does not have much free time, but when she does, she enjoys going out to lunch with friends and reading. 

One great memory Mary Kay has included that of her son, Alex.  While driving back from picking Alex up at college, he remarked how much he admires the work that she has done over the years.  The example that Mary Kay has provided has empowered him to pay it forward by getting involved in politics and leadership roles.   May Kay continues to advocate for children and wants everyone to know that one person can make a difference.

 

 

 Advocate interview provided by Blog Contributor Amanda Orfitelli.

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Mark Your Calendar for the EmpowerMEnt Challenge!

We’re gearing up for National Childhood Obesity Awareness Month and we want you to be in on all of the action!  Throughout September, we’re encouraging families across the country to take control of their healthy by participating in the EmpowerMEnt Challenge.  Each week, families and kids will pursue a different goal, including eating more fruits and veggies, limiting sugary drinks, reducing sodium intake, and increasing physical activity.  Each goal is fun, simple, won’t break the bank and can be done as a family.  And by the end of the month, families will be a step ahead on the road to a heart-healthy life. 

So mark your calendar for the challenge kick-off on September 1st!  Complimentary templates and activities, broken down into the themed weeks, are now available on www.heart.org/healthierkids.  In addition, you're invited to join our EmpowerMEnt Challenge Facebook group, where you can make the commitment to take the challenge and share your progress with others.  

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Help You're the Cure by Having a Party?!

Huh?!  I can help You’re the Cure by having a party?  You sure can, and it’s fun to do!    

Tupperware might have started the trend, but many since have figured out the beauty of sharing a message with a group of friends to help get something done.  One of the ways we get advocacy done is with ‘house parties.’  

Growing the You’re the Cure network is our how we have power to leverage, to get our bills passed – bills that help people live longer healthier lives.  A house party is a fun way you can pull your friends and family into the fold, helping them understand the importance of our work, and inviting them to help the cause by joining the network.  And unlike Tupperware, it won’t cost them a penny. 

Here’s how simple it can be:

  • Let us know what you want to do so we can provide support! If you don’t already have our contact information, find your AHA advocacy contacts here.  
  • Pick a date and invite your contacts.  Include information about why working with us is important to you.  Many now use online event-planning tools like Eventbrite, to make sending invitation and tracking RSVPs easier than pie.  Facebook is a good distribution vehicle too.  Or maybe phone calls or written invitations are more your cup of tea.  You decide what works best for you.
  • Plan a few healthy snacks….yeah they should be healthy!  You are representing the American Heart Association and American Stroke Association, after all.  We have lots of free healthy recipes online, and you can keep it very simple.  
  • At the event, mingle with your guests, have fun, and make a short pitch asking them to join the effort.  We have guides and sign-up sheets you can use to make it easy.
  • Take pics for sharing, and be sure to thank everyone!
  • Let us know how it went, and return sign-ups so we can get them entered in the network!

Here’s what Larry and Karen Calhoun, a North Carolina couple who do house parties annually, say: 

“We do a party for You’re the Cure and the Heart Walk every year, and it’s become something we really look forward to. We cook a heart healthy Cajun meal and thus our team name, the Cardiac Cajuns. The American Heart Association has helped us get organized and given support by providing information and visual displays about YTC, heart disease, and the work of AHA.  We really enjoy getting our friends together and love knowing we’re helping build the grassroots network in the process.”

You can put your own twist on the idea to ‘make it your own.’  We even heard of someone who did a mobile house party, going around to their friends’ houses to do individual sign-ups! 

Host the Ultimate House Party: a party that can save lives!   Will you do one?

 

 Guests mingle and chat at a 'House Party' at Larry and Karen Calhoun's

 

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Be One In A Million

Million Hearts is an answer. Heart disease and stroke are the first and fourth leading causes of death in the United States. Heart disease is responsible for 1 of every 4 deaths in the country and the #1 killer of women.  But effective community CVD prevention interventions have been underutilized due to a lack of a coordinated national effort.  We must do something to change this, but what could be big enough?

Million Hearts is a national initiative by the US Department of Health and Human Services (HHS) that has set an ambitious goal to prevent one million heart attacks and strokes by 2017.

Million Hearts aims to prevent heart disease and stroke by:

  • Improving access to effective care.
  • Improving the quality of care.
  • Focusing clinical attention on the prevention of heart attack and stroke.
  • Activating the public to lead a heart-healthy lifestyle.
  • Improving the prescription and adherence to appropriate medications.

Each year there are approximately 2 million heart attacks and strokes in the United States. The campaign is expected to produce a 10 percent reduction in the rate of acute cardiovascular events each year for 5 years resulting in one million heart attack and strokes prevented.

The AHA applauds the launch of Million Hearts and is grateful for the opportunities we have been provided to help inform, shape, and support the initiative. We look forward to joining and partnering with the HHS in implementing this initiative, which has the potential to advance the mission and work of the AHA dramatically and to help us achieve our ambitious 2020 Health Impact Goal.

This initiative will focus, coordinate, and enhance cardiovascular disease prevention activities across the public and private sectors in an unprecedented effort to prevent one million heart attacks and strokes by 2017 and demonstrate to all that improving the health system can save lives.

Will you be one in a million?  Be one who makes the commitment to lead a heart-healthy lifestyle….do your part to live a life free of heart disease and stroke. 

Watch your inbox for our action requests to support You’re the Cure policy efforts around healthy living and prevention.  Open and click to help more of the million get there!

 

Thanks to volunteer writer/YTC advocate Karen Wiggins, for help developing this blog post.

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Sara Beckwith

Sara Beckwith, District of Columbia

Why is advocacy work so important? To Sara Beckwith it is about passion, and because she “truly believes that we have a voice and it is imperative to use our voice to work on programs such as the Healthy Tots Act and the Workplace Wellness Act.” Sara has worked hard with You’re the Cure and the American Heart Association to be an advocate for heart healthy legislation because she has witnessed the benefits firsthand in the community.

Sara is also passionate about food. One of her favorite activities is trying different restaurants in the District with her husband and when she cooks she experiments with different recipes. Food is also an essential part of her career. She first became interested in improving heart health when she worked as a cardiopulmonary rehab dietician in North Carolina. This position allowed her to help patients recuperating from heart surgeries and teach them how to take care of their hearts by eating healthy.

For the last five years, Sara has worked as a dietician teaching low-income families in the District to make healthy choices. It is through these experiences that she has come to see the direct impacts of advocacy work on the health of families. She has worked hard to support the funding for tobacco cessation programs so that families in DC can receive the help that they need.

As a dietician, Sara has been able to council women about their high blood pressure and knows that many people do not understand the consequences of these health problems. These experiences have driven Sara’s passion to advocate for legislation that will impact the health of the community.

What Sara finds as the most satisfying about advocacy work is “being a part of the public policy process and having a voice” and to others out there sitting on the fence about advocating for healthier lives she would say “Never doubt the power of one voice, our personal stories, passion, and conviction have a tremendous impact on policy makers.”

 

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