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Share Your Story-Benny

Benny Missouri

Benny was born on July 18, 2014 at 37 weeks with a Congenital Heart Defect.  He is our second blessing and little miracle baby. His diagnosis is Double Outlet Right Ventricle with Sub-aortic Ventricular Septical Defect, Supraventricular Tachycardia, Dextrocardia, Heterotaxy with Asplenia, Malrotation of the intestines and Wolff-Parkinson-White Syndrome. In simple terms, Benny had a large hole between the both ventricles, his aorta and pulmonary artery is on the right ventricle, he can go into episodes where his heart can beat up to 260 beats per minute, his heart and stomach are on the right side of his body, his intestines are not rotated properly and can twist and he has no spleen. Since he has no spleen, Benny needs to take antibiotics twice a day for the rest of his life and we need to be extra careful he doesn't get sick so he doesn't end up in the ER.

How did all this happen you ask? Well, no one really knows yet. The genetics Doctors are still doing studies to research if it was genetics or just something random that happened. Throughout my entire pregnancy I was super healthy and did everything I was supposed to. We didn’t find all this out until I was 35 weeks pregnant. I felt like something wasn't right and had gone to the Doctor, who then sent me to the hospital, who then confirmed that he was in and had a hole in his heart. The local hospital couldn’t tell us much since they were limited on testing so they decided to send me to Barnes Jewish Hospital in St. Louis MO. They ended up flying me up there the same night and testing began the very next morning.

After several tests, ultrasounds and EKGs and ECHOs later, all was confirmed. We were devastated that our baby was going to have to go though some extreme challenges right as he was born, but all the Doctors were hopeful. We owe so much and are so grateful to have a team of wonderful doctors. Benny had to stay in the hospital in St. Louis for a month and a half before we could bring him home. While at the hospital, Benny had to get a PA band around one of his pulmonary artery to slow down the blood flow into his lungs. That was a temporary fix until he received his open heart surgery to repair the hole in his heart in May 5, 2015. We've had a few other scares where we've had to rush him to the ER in St. Louis because of his SVT (fast heartbeat).  During one of his episodes, it took 10 hours to get him back to normal heart rhythm. The doctors had to shock his heart 3 times and drain fluid from around his heart.

When I became a heart mom I knew I had to do several things for my son Benny, one of which was be an advocate for him and for Congenital Heart Defect Awareness. Many people are not quite familiar about Congenital Heart Defects. They don't ...know that Congenital Heart Defects are the most common defects in the U.S., 1 in 100 babies are born with it. Approximately 40,000 babies are born in the U.S. with a CHD each year. Or that CHD's are the leading cause of infant deaths in the United States. Also, Congenital Heart Defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.

One of my many jobs as a heart mom is to share the information about CHDs. The more awareness there is, the more fundraising and funding there is. And the more funding, the more research there is to make better medicines with less side effects, more research to make surgeries less risky and hopefully find a cure and prevention one day.

Our Benny is a tough fighter and will continue to fight. Benny is why we raise awareness.  Join Benny in his fight against Heart Disease and Stroke at this year’s Heart Walk. Register Here

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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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Share Your Story-Lisa Smith

Lisa Smith Missouri

For more than 20 years, Lisa Smith has taught CPR to students and colleagues in Denver, providing training as many as 30 times a year.  The question she often heard was whether she’d ever performed CPR in an emergency.  No, she would say, adding, "I hope I could just jump in if a situation arose, especially since it’s usually someone you know."  That’s exactly what happened on Nov. 20, 2014, in the weight room of Denver East High School.

Smith teaches honors Health and Medical Science classes, with HeartSaver CPR/AED/First Aid as part of her curriculum. She’s also the school’s head athletic trainer.  On this fateful morning, she was on campus at about 6 a.m. to monitor the cheerleading squad as they practiced stunts for an upcoming competition.  She happened to be in the assistant principal’s office, with the doors open to both the gym and the hallway, when she heard a commotion in the hallway and went to see what was happening.  Two security guards running out of their office said that assistant principal Wes Ashley collapsed in the weight room. Another colleague already had called 9-1-1. 

Read More to learn how important CPR education is in saving peoples lives.

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Welcome Karen Englert to the Team!

Help us welcome Karen Englert, new Government Relations Director, to the American Heart Association's Missouri Advocacy Team! Karen joins our staff after serving as a volunteer and believes wholeheartedly in our lifesaving mission. In fact, Karen is a survivor of heart disease herself. This year, Karen will be focused on helping to pass the CPR in Schools legislation, working to ensure all high school students across the state receive an introduction to the lifesaving skill of CPR. Welcome aboard, Karen!

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Take the You're the Cure Advocate Survey

2015 was a great year for You're the Cure advocates and the many policy efforts that you work on. We have big plans for 2016, and we want to hear from you and what you want to see in the future for You're the Cure.

So take the survey now and let your voice be heard.

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Share Your Story-Missouri Wear Red Day

Wear Red Day Missouri

Wednesday, February 3rd was Wear RED Day at the Missouri Capitol.  Thanks to all the volunteers and advocates that made the trip to Jefferson City to help us fill the halls with RED! We dropped by our law makers offices to introduce ourselves and then listened in as the Wear Red Day resolution was read on both the House and Senate floor!

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Share Your Story-Toni Reel

Toni Reel

As a child, I was told my only option to live a normal life was to have open-heart surgery. My parents didn’t think this was the best solution for me, and became my biggest advocates. This is why I made a commitment to pay it forward and like my parents, I would be a voice for those who don’t have one –children.  Here is my story:

At age one, I was diagnosed with Paroxysmal Supraventricular Tachycardia (PSVT), and by age eight, I discovered I had another problem - Wolff–Parkinson–White Syndrome (WPW).  My heart produced irregular heartbeats. During an episode, my resting heartrate would run 150 to 200 or upwards of 300 beats per minute. My case was difficult to control because attacks occurred frequent - a couple times a week was normal for me. I was hospitalized often for various reasons either for heart procedures or for monitoring of new drug therapies. One side effect of a drug caused me to go into a diabetic coma. My doctors told me that eventually I would need open-heart surgery. Even though my episodes were often, my doctors agreed this surgery could be delayed. My parents made sure I saw the top cardiologist, remained current on new cardiovascular advancements, and encouraged me to live a normal, active lifestyle; swimming, playing tennis and running. They were my voice when others simply did not listen to me.    

My heart became a barrier as I got older, and I was eager to have my heart problem fixed. So, at age 17, my parents looked into a new non-invasive surgery: Cardiac Ablation.  Still being studied, this heart procedure was available at two locations; University of Oklahoma and the University of Michigan. I would later learn that this breakthrough heart surgery was initially funded by an American Heart Association research grant. 

During the summer of 1991, Dr. Fred Morady, cardiologist with the University of Michigan, performed my first cardiac ablation. The procedure was difficult because a good pathway was wrapped around a bad one, like licorice.  One nick on the good pathway, and I would forever be on a pacemaker. The procedure was a success, and I still remember Dr. Morady telling me he fixed it. My reaction: tears. A week later, I participated in a week-long intensive tennis camp.

Ten years after this procedure, I discovered I had another irregular heart rhythm, so I underwent my second heart ablation at Washington University in St. Louis. My recovery was quick, but unfortunately, it didn’t completely fix the irregular heart rhythm. I consider this a blessing, though, because these extra beats tell me when I need to pay attention to my body: manage my stress, eat healthy, and exercise.

I am so grateful to my parents for ensuring I had access to the best healthcare, my cardiologists and medical staff who took great care of me, and the American Heart Association for funding the exploratory heart procedure that forever changed my life. From an early age, I knew I wanted to have children, and so it has been my greatest gift that I became a mom to my son, Peyton (11), and my daughter, Phoebe (7). The bonus is they are healthy, smart, and active kids. 

Just as my parents did for me, I want to be the voice for others. That is why I volunteer for the American Heart Association’s You’re the Cure advocacy initiatives and advocate for heart health for all children. We have come a long way, but there is still a lot of work that needs to be done to make sure our children grow up to be healthy, active adults.

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Get Social With Your Members of Congress

Will you be on Facebook or Twitter today? Your Members of Congress and their staff will be, and it's a good place to reach them according to a report released in October by the Congressional Management Foundation (CMF).

The CMF report, #SocialCongress, says Congressional offices are listening to social media chatter and it takes relatively few posts or comments to get their attention. That's good news for us!

So, how can you use the Facebook newsfeed or Twitter timeline to get the attention of lawmakers and help pass heart healthy policies?

  • Follow your members of Congress, as well as state and local elected officials on Twitter. ‘Like’ and ‘Follow’ their pages on Facebook.
  • Tweet about our health policy issues, tagging the appropriate legislators by using the @ sign and their Twitter handle. For example: I’m from Pennsylvania, so I’d tag my U.S. Senators by including @SenBobCasey & @SenToomey in my tweet.
  • If they allow it, you can post about our issues directly on the Facebook pages of elected officials. Frequently, that feature is disabled but you are able to comment on their posts. According to #SocialCongress, Congressional offices typically monitor those comments for a limited period of time. Your best bet is to comment within the first 24 hours after a post.
  • Rally your friends and family members to tweet, post or comment about an issue on a single ‘day of action’. CMF’s survey data shows just 30 or fewer comments can be enough to make a legislative office pay attention.
  • Be sure to use the campaign hashtag if one has been created by your advocacy staff partners. The #hashtag allows all the relevant posts to be woven together to tell our story, and makes your post searchable by others interested in the issue.    

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Share Your Story - Kathy Nolte

Kathy Nolte Missouri

In 2012, I made up my mind that I was going to lose weight once and for all. My knees had begun hurting and I so wanted to feel healthy again. I decided my best option would be to join a weight loss program and to my surprise, it worked. I was successful in losing 53 pounds. Not only did I lose it, I was able to keep it off for 2 years.

Attending the support group was the reason I was able to lose the weight. I even became a regular at the gym. I am proud to say that I did 1200 burpees in one month. It was a challenge that I set for myself and was able to accomplish. I felt healthier than I had ever felt before. It was a 12 month process that not only allowed me to lose the weight but also to gain a forever friend in Ellen, my support group leader. Ellen was a cardiac arrest survivor and very involved with the American Heart Association.

One afternoon, Ellen was giving a speech which was quite a distance from my home, but I wanted to attend to show her my support. During the talk, Ellen described the symptoms she had experienced with her heart attack. The one that stuck in my mind was the heart burn she had prior to her heart attack. I remember thinking that I had been having terrible heart burn for the last couple of days.

I was a little concerned but also hungry for lunch so of course I chose to eat. My heartburn continued to get worse. At that point, I decided to call my doctor’s office where they advised me to call 911 immediately. After reaching the paramedics, I decided to follow Ellen's advice and lay down next to my unlocked car door just in case I would pass out. Lucky for me, Ellen’s speech opened my eyes to the fact that I may be having a heart attack myself. Prior to her speech I would have never understood or given it a second thought to what my body was going through. After all, I was feeling so confident with my current weight loss and exercise regimen that I couldn’t believe anything could be wrong with my health.

Thanks to Ellen and her willingness to be open and honest about her experience that she probably saved my life. She has inspired me to pay it forward by sharing my story with the hope of being able to help someone else.

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Share Your Story: Volunteer Advocacy Summit-MO

Advocacy Volunteer Summit Missouri

Meet our top active, committed and hero volunteers that recently attended our "Advocacy Volunteer Summit, 2015". It has always been important to us to recognize and show them how thankful we are for their help in the fight against heart disease and stroke, so we decided to implement a new advocate recognition program.

Our goal is to give our top advocates an opportunity to network with others from across their state, get the inside scoop on our local and federal legislative efforts, allow us to share our mission and goals with them, work with them to help tell their stories in a quick and impactful way and help them gain an understanding of their role in the legislative process.

Another benefit to being a top advocate is that they receive access to our insider perks! Some of these perks include insider calls where they will get the inside scoop on what’s happening under the dome, invites to special events and trainings held throughout the year like our advocacy summits and first consideration to attend national events like our National Lobby Day on the Hill in Washington DC.

We had a fun and informative day at this year’s Advocacy Volunteer Summit! Hope you will be able to join us next year by earning points to become a top advocate. Here’s how.

 

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