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Improving Lives through Advocacy

The American Heart Association saves and improves lives by advocating for laws that help people live healthy. It's part of our effort to build a "culture of health," in which we create environments where the healthy choice is the easy choice.

Here's a look at some of the exciting victories from the past year: (You can click on the document below to view a larger version for easier reading.)

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#HeartAtTheWH

Last Friday, nearly 200 You’re the Cure volunteers went to the White House as part of the Obama administration’s briefing series on “Making Health Care Better,” with an emphasis on cardiovascular health. The forum followed the release of a White House report on the progress made over the past eight years in research, prevention, coverage, treatment, and quality when it comes to cardiovascular disease and care.

As AHA President Steven Houser, Ph.D., welcomed advocates to Washington and the White House, he highlighted the success of the Affordable Care Act and the more than seven million patients with cardiovascular disease and risk factors that are now covered under the ACA.

Volunteers in attendance were also active on social media, urging their friends and family to tune in to the briefing via a livestream and, more important, add their voice to the conversation (you can watch a condensed version here). And if you haven’t gotten the chance yet, please sign our petition to the next President, urging them to continue fighting for policies that will help reduce and someday end cardiovascular disease and stroke.

Panelists included federal officials, AHA CEO Nancy Brown, and an incredibly inspiring panel of cardiovascular disease survivors, who spoke about how they’ve met their health-related challenges head on, including Gracie Doran, a 17-year-old pediatric stroke survivor who reminded the audience that “stroke can happen to anyone at any age.”

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Share Your Story - Oakes Ortyl and Oliver Hinkle

Oakes Ortyl and Oliver Hinkle Missouri

A shared loss cemented a friendship and began a business partnership for Mark Hinkle and Greg Ortyl, the owners of St. Louis-area Olive + Oak. The restaurant pays tribute to their late sons, Oliver and Oakes, and raises awareness and funds for congenital heart defects. Hinkle and his wife Jennifer lost Oliver in 2013. They founded the Ollie Hinkle Heart Foundation to help other congenital heart disease organizations. The foundation’s food and wine event raises $100,000 each year. "After going through the pain and tragedy of losing a child, what we got out of it was seeing a lot of good in people," Hinkle said. "You learn to let the negative things go away." On a similar path, Ortyl and his wife Becky formed the Mighty Oaks Heart Foundation shortly before Oakes died in 2012. The organization provides financial support to families going through CHD treatment. In five years, it has raised more than $1 million.

Opened last fall, the restaurant has received rave reviews from food critics. It features a wall filled with photos of Oliver, Oakes and other "heart babies," Hinkle said. A neon red heart attached to a tree trunk overlooks the bar, and a heart-shaped oak tree sculpture towers over diners. Small heart graphics appear within the polished cement floors. Felt hearts, worn by many of the staff, and large wooden heart cutouts are sold to benefit the foundations. "You get that crowd of people who are familiar with our cause," Hinkle said. "Hopefully they love the food and wine [too]."

The couples met by chance. Jennifer noticed Becky’s Mighty Oakes Heart Foundation T-shirt and introduced herself. Despite a career in fiber optics, Ortyl had always wanted to open a restaurant. "I thought, ‘I wish I could find someone from the industry so I could keep my day job,’" he said. "And lo and behold, my son Oakes led me to meeting up with Mark." Hinkle runs the day-to-day operations of Olive + Oak, located just outside St. Louis in Webster Groves, where both families live.

"From day one [Olive + Oak] sounded like the perfect name," Ortyl said. "I got chills thinking about it. I knew we would be successful." The couples admit being relatively clueless about congenital heart defects before their sons were born. "Now we get it — more and more people around us get it," Hinkle said.

Oliver was born with a hole between the two lower chambers of the heart, known as a ventricular septal defect. The family expected a "very simple fix," Hinkle said. After a successful surgery to close the hole, Oliver developed complications that required a pacemaker. Several months later, 1-year-old Oliver died after contracting the flu. Becky was five months pregnant when doctors discovered Oakes had truncus arteriosus, a condition in which only one blood vessel branches from the heart instead of two separate ones that carry blood to the body and the lungs. With the normal course of three surgeries, Oakes could live a relatively normal life, doctors had said. But unexpected problems led to additional surgeries, including a lung transplant. Despite the challenges, "up until the last 30 days of his life, he had a spirit and a fight," Ortyl said. The family nicknamed him "Mighty Oakes." Oakes died at 15 months old.

Neither Hinkle nor Ortyl allowed their grief to impede their drive to help others facing congenital heart disease or to pursue their own professional dreams. "I’m not a flashy guy," Ortyl said. "But it’s humbling to see a restaurant that tells a story."

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Share Your Story - Mark Ridder

Mark Ridder Kansas

Mark Ridder was only a 14 when he took a routine physical before entering high school and learned he had a pronounced heart murmur.

He had always struggled as a child to keep up while running and playing with his brother and cousins, and that exam nearly 50 years ago explained why.  "I would always lag behind, and would get winded easily, but I always thought it was because I was smaller than they were," he said.

The cardiologist at the time told him to avoid strenuous activity, but he wasn’t given any insight into what might be causing the condition. He also wasn’t told that he should regularly consult with a cardiologist in the future.  He grew up watching his father suffer from heart disease and was determined not to follow in his footsteps of heavy smoking, poor diet and lack of exercise. Ridder’s dad had his first cardiac event at age 39 and struggled with progressive atherosclerosis until he died at age 68.

"I saw how it limited his life and ability to function, and I knew I didn’t want that to happen to me," said Ridder, who maintained a healthy lifestyle and kept active with moderate exercise. In 1993, he had a physical done for an executive position. Ridder got his first echocardiogram, which revealed that he had a bicuspid aortic valve — one that has only two leaflets instead of the normal three — and calcification was preventing it from properly opening or closing.

The condition was congenital, meaning the deformed valve was present at birth, and he would need to be monitored to ensure that it wasn’t worsening. By 2011, Ridder, then 59, began having heart palpitations, shortness of breath and became tired more easily. Initially he attributed the symptoms to aging, but an echocardiogram in the summer of 2012 showed his valve condition, called aortic valve stenosis had become severe and replacement of the damaged valve would be required.  "It was a real eye opener," said Ridder of Wichita, Kansas. "I had this idea in my head that I may go my whole life and never need surgery." He decided to have his surgery at the Cleveland Clinic in Ohio, which took additional coordination.

Heart valve replacement, using a bovine bio-prosthetic tissue valve, was done in November 2012. His recovery had ups and downs, but Ridder credits his 12 weeks of cardiac rehab for helping him quickly regain strength and stamina and reach his goal of returning to a healthy lifestyle. "I decided I’d know I was back if I could condition for and run a 10K," Ridder said. He met that goal in May 2014, less than two years after his valve was replaced. Ridder now runs 4.5 miles every other day and feels "better than I ever have in my life."

The experience also changed him emotionally as he processed what had happened and connected with other heart valve patients. Understanding the power of community, Ridder decided to mentor others as an American Heart Association Heart Valve Ambassador. "I’m so grateful each day that I have a healthy heart and healthy life," he said. "I wouldn’t be alive without this procedure." 

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Share Your Story - Kate Larson

Katelyn Larson Iowa

Katelyn Larson was born a beautiful and health baby but suddenly at 3 months old, she became very sick. That night she would not eat, started choking, her lips turned blue and she became lethargic. Her parents raced her to the closest ER in Ida Grove, where an X-Ray showed an enlargement in her heart. 

Children's Hospital and Medical Center in Omaha was contacted and they sent their own ambulance to transport her to Omaha. More tests were run and her breathing and condition rapidly grew worse. She was rushed into the PICU and was hooked up to life support. She stopped breathing and had to be resuscitated. That morning her parents were told that her left heart chamber was enlarged twice its size and that she would most likely need a heart transplant! 

She was diagnosed with dilated cardiomyopathy, caused by a genetic marker and a virus that went to her heart. She was placed on the heart transplant list and waited 28 days for her new gift of a healthy heart. She was released to go home and reunite with her two older brothers after being away for almost 3 months.

Today, Katelyn has passed all of her growth markers and is an active and vibrant 2 year old. She is now only on 3 medications, down from 15. She is an overcomer and reminds us all of how precious life is. 

 

 

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Ready, Get Set, Get Fit: #GoRedGetFit Launches its 3rd Quarter Challenge!

#GoRedGetFit is a Facebook fitness challenge and platform that provides women with the education, support, motivation and accountability to create optimal results in living a healthy lifestyle. Each challenge includes a physical activity and nutrition component.

The new challenge “Less Salt, More Sweat” consists of limiting your sodium intake to 1,500 mg or less a day and getting 150 minutes of physical activity a week (or 30 minutes, 5 days a week). The challenges are designed and led by the expertise of (4) volunteer celebrity trainers and wellness experts. #GoRedGetFit is a Go Red for Women initiative nationally sponsored by Macy’s.

This group might just be what you need to have a breakthrough in living a healthier lifestyle but don’t just take our word for it. Check out the group and see what some of the members have to say.

“While I haven’t suffered from heart disease, stroke or any of the major risk factors, each and every personal story shared in the Go Red Get Fit Facebook group has inspired me to start working out, eat healthier and stay consistent in my journey toward achieving a healthy weight. I now make my health and my “self” a priority as diseases can afflict anyone at any time,” says Teresa Coulter, Go Red Get Fit Facebook group member. “This group has prevented this woman from having health complications in the future. So from the bottom of my healthy heart, thank you for the daily awareness, support and motivation I’ve never been able to find.”

We invite you to join today because your health can’t wait. Are you up for the challenge? Get more details here.

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Meet Dr. Steven Houser - New President of AHA

We’re excited to introduce the new AHA President, Steven Houser, Ph.D., FAHA. He not only serves as President but is the senior associate dean of research at Temple University. Most importantly Dr. Houser in a veteran You’re the Cure advocate having testified before Congress and has participated alongside fellow advocates in lobby days at our nation’s Capital. Watch this short video to learn more about Dr. Houser and why he volunteers for the AHA and read more about him here.

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How fate brought together three stroke survivors' families

The following article about You're the Cure advocate Ryley Williams and two other youths who survived strokes on the same day was published by AHA CEO Nancy Brown in the Huffington Post on July 6th, 2016. A link is provided at the end of the story.

In the community of Dartmouth in the Canadian province Nova Scotia, Nik Latter’s family is throwing what his mom promises will be “a big ol’ party.” Fist bumps and hugs will celebrate the fact he’s made it an entire year since his devastating July 8th.

One by one, over each of the last three July 8s, Ryley, Amber and Nik suffered a stroke. Yet the oddity of their shared date is only part of what led their moms to create a de facto support group.

What really brought them together is that Ryley, Amber and Nik were — and still are — teenagers.

Ryley was 15 and devoted to becoming the starting nose guard on his varsity football team. Amber was 13 and loved playing softball and hanging out with the two girls who’d been her best friends since kindergarten. Nik was a few days shy of 18 and had left school to work at a restaurant; he’d bought a car and aimed to become a voluntary firefighter following that upcoming birthday.

Now, well, their dreams are different.

As we approach July 8, the families allowed me to share their stories to send an important message: Stroke can attack anyone at any time.

***

Ryley Williams went into the summer following his freshman year at Bentonville (Arkansas) High with one goal. He wanted to draw the attention of the varsity football coaches.

So he ran and lifted weights. He ate six meals a day, devouring only foods that would expand his 6-foot, 242-pound frame the right way.

“Honey, you’re never late, you make good grades, you don’t cause any problems — trust me, the coaches notice you,” his mom, Terri Rose, told him. “They just won’t tell you they notice you.”

The morning of Monday, July 8, 2013, Ryley went to an indoor field for football practice. He was stretching when he grabbed his leg and collapsed. Everyone thought he’d pulled a muscle and overreacted. Then they realized there was more to it.

At the hospital, a brain scan showed a bigger problem than the facility could handle. He was flown by helicopter to Arkansas Children’s Hospital in Little Rock. It wasn’t easy fitting someone his size into the chopper.

When they landed, seizures began. Off he went for an MRI. Looking at the results, the doctor pointed to five spots.

“This is a stroke, this is a stroke, this is a stroke, this is a stroke and this is a stroke,” the doctor said. “We need to find out why he has so many blood clots in his brain.”

Around 3 a.m. Wednesday, they still didn’t know why. And now they had a new problem. Ryley’s brain was swelling.

He underwent an operation to remove part of his skull. With Ryley sedated, doctors also took a closer look at his heart. They found hair-like strands of a bacterial infection on the outside of two valves. A-ha! This was the source.

Next question: How much brain damage had he suffered? His right side didn’t function. Doctors cautioned he may never walk or talk.

As Ryley was coming out of his medically induced coma, some football players visited. Coaches, too. They brought a varsity jersey with his number, 99.

“The head coach drove down to Little Rock and stayed with us when Ryley had the skull surgery,” Terri said. “Other coaches came to visit, too. They told us they were watching him. They knew he was going to have a big year. Hearing that was bittersweet.”

Fast forward to today.

His right arm remains compromised. He also battles aphasia, a condition that sometimes makes it hard for him to get words out. Still, Ryley recently graduated high school, right on time. He even spent the last year working at a Walmart Neighborhood Market. And he’s become an advocate for the American Stroke Association. Last year, he and Terri encouraged a Congressional subcommittee in Washington, D.C., to support more funding for research and awareness about pediatric stroke.

He’s spending this summer at a facility that specializes in neuropsychology recovery for victims of strokes and traumatic brain injuries. He’s learning skills to live on his own, although he plans to spend two years at home while attending Northwest Arkansas Community College.

“He’s incredibly positive,” Terri said. “He’s accepted everything. He tells you, `This is who I am now.’”

***

The night of July 8, 2014, Amber Hebert was on first base when the next batter hit the ball to the outfield.

Amber ran to second base without anyone trying to get her out, then fell as if she’d been punched. She vomited and went into a seizure. Her 5-foot-3, 86-pound body thrashed so violently that four firefighters held her down while a fifth injected her with medicine.

The local hospital in Bellevue, Nebraska, ended up sending her to Children’s Hospital & Medical Center in Omaha. The seizures continued until 3 a.m.

“When she finally stopped seizing, she was able to see and talk and understand you,” said her mom, Tirzah Hebert. “But I could see the fear in her eyes.”

Tests — and seizures — continued throughout the next day. Finally, doctors declared she’d suffered a stroke.

The next day, Amber sat in a chair holding a cup and walked around her hospital floor. The following day, she had a bit more difficulty holding a cup but could still walk. That night, Tirzah asked if she understood what had happened.

“I don’t know,” Amber said.

The next day, a Saturday, Amber couldn’t walk, talk or hold up her head. This continued until Tuesday, when she finally underwent an MRI. It showed that her brain was swelling.

Doctors were able to reduce it with medicine. Then came the waiting game to determine the extent of brain damage. Soon, she began smiling and communicating with her left hand — fist for yes, open palm for no.

These days, Amber walks, but sometimes the toes on her right foot curl, causing her to drag her foot.

She can’t move her right hand or wrist. She also has aphasia. Therapists believe that with practice she’ll improve in every area. (Doctors never determined the cause of her stroke.)

Alas, there have been other obstacles.

Shortly after Amber made it home, her dad’s dad — with whom she was very close — died of cancer. Four months later, a lump in her dad’s neck was found to be cancerous. Early detection plus chemotherapy and radiation helped him beat it.

School proved no refuge. She went from being one of the most popular girls at school to getting bullied. Her two lifelong best friends “just disappeared,” Tirzah said. Amber switched to homeschooling until giving the classroom another try this summer.

“She’s a happy girl, for the most part, very loving and caring,” Tirzah said. “She still has some depression, but who wouldn’t? To have your life completely turned upside down like hers has?”

***

Even as a child, Nik Latter struggled with migraines. So, last June, when he had one that was bad enough to go to a hospital, nobody thought much of it.

Nor did anyone think twice when he left work complaining of a migraine on Sunday, July 5, 2015.

The next day, he endured what he described as the worst migraine he’d ever experienced. He wore sunglasses indoors and had his mom, Rhonda, drive him to a clinic. The next day, he slept at his grandparents’ house because it was quieter than being home with his two younger sisters.

Rhonda visited him Wednesday, he stared blankly. He tried talking, but nothing came out.

“He’s having a stroke,” she declared. “Call 911!”

A scan showed a mass on the right side of his brain. During an operation, doctors determined it was a stroke. Days later, it was determined the cause was a sinus infection gone severely wrong. The infection broke the barrier between the sinus and the brain, releasing a blood clot.

Nik’s recovery started great. He gave hugs, pulled his mom’s hair and played thumb wars with his sisters. Then, in the early hours of July 16, he had another stroke. On the other side of his brain.

Doctors said Nik may not survive. But the family wanted to give him every chance. Their faith was rewarded when he was weaned off the breathing tube.

He continued clearing hurdles, although he remained hospitalized until March. The long struggle seemed to deflate him; being home reinvigorated him. He now puts his right foot down and pushes his wheelchair. He fist bumps with his right hand, laughs, smiles and kicks.

He makes sounds and, sometimes, says words. Not enough to say he’s talking. But he’s trying.

“He’s very aware of his surroundings,” Rhonda said.

***

While each stroke story is different, every stroke shares similarities.

Time lost is brain lost. The sooner the stroke can be recognized, the sooner treatment can begin. The gold standard of treatment is called tPA. If this clot-busting drug is administered within three hours, and up to 4.5 hours in some cases, the extent of recovery can improve drastically.

That’s why the American Stroke Association urges everyone to remember the acronym FAST. When you see Face drooping, Arm weakness or Speech difficulty, it’s Time to call 911.

Stroke is the No. 2 killer worldwide and No. 5 in the United States. While it’s true that strokes usually happen to older people is true, Ryley, Amber and Nik are proof that’s not always the case.

The world of pediatric stroke is small enough — and the pull of the internet is strong enough — that families of survivors are bound to find each other.

For instance, Terri connected with Lea Chaulk, a Canadian mom whose son was about the same age as Ryley and had a stroke about the same time. Terri and Lea became like sisters as they helped their sons grieve over the lives they lost and learn to embrace their new reality. Lea later introduced Terri to Rhonda.

Meanwhile, Ryley got to know four teenagers from the Kansas City area who were featured by American Heart Association News after they overcame strokes during high school to graduate on time. One of those families had gotten to know the Heberts, and they connected Terri and Tirzah.

The three moms — Terri, Tirzah and Rhonda — lean on each other often. They’ve yet to meet in person, although Ryley and Amber have shared messages via Facebook.

“Knowing that I’m not alone has helped soooo much,” Tirzah said.

“If I didn’t have some of these moms, I think I’d go insane,” said Rhonda, laughing. “Sometimes I sit down and get lost in thought and get upset. Then I’ll send one of them a message saying `I need you to bring me back down to Earth.’”

Three families irrevocably altered, all on a July 8. It’s incredible. Yet from this coincidence comes strength.

“I’ve told my family, `Look, it happened to two other kids on the same day,’” Tirzah said. “It’s like, Wow. And we’ve all made it this far. And you know what? We’re going to keep on going.”

Read the rest of the story on the Huffington Post.

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Share Your Story - Jackie Blake

Jackie Blake Iowa

One word…TERRIFYING.  That is how Ross Blake describes the events on July 20, 2009.  He, along with his wife Jackie and their young daughter Madelyn, had just embarked on a road trip to see his sister in Eastern Iowa when Jackie started to complain that she could not see while driving.  After guiding Jackie to gently press the brakes while he steered the car onto the side of the road for her, Ross called 9-1-1. 

Jackie was transported to a local hospital via ambulance where her symptoms worsened.  She began vomiting and had difficulty speaking.   Doctors performed a CT scan that came back clear, so Jackie was diagnosed with a migraine and sent home to rest.  But shortly after leaving the hospital Ross saw that his wife’s eyes were pointing in two different directions.  One aimed at him, and one looking down to the center console in the car.  They headed back to the hospital where it was determined that Jackie needed to be transported to Des Moines for further evaluation.  They would soon discover that Jackie was having a stroke, and that she needed emergency surgery to dissolve the clot in her brain. 

"There is a 30% chance that your wife will survive surgery.  If she does, she will likely be in a nursing home."

As Ross heard those words and sent Jackie into surgery, he thought about the possibility of losing his wife and raising their daughter alone.  It was the worst feeling ever.

Thankfully, Jackie survived surgery, but it was still yet to be determined what kind of condition she would be in when she woke up.  At first, she couldn’t write or talk, so Jackie tried using sign language.  The nurses taught her how to suction the saliva out of her own mouth because she couldn’t swallow. 

Over the next two weeks Jackie spent 6 grueling hours in therapy at the hospital each day, learning to walk, learning to talk, remembering colors and fighting to get stronger so she could hold her daughter again.  The sight of his wife in that condition caused a variety of emotions for Ross…terror, sympathy, sadness.  But one day her sarcasm and sense of humor returned, and Ross knew she was going to be ok.

Upon being released from the hospital Jackie continued to slur her speech, she was easily irritated and things still felt a bit "cloudy", so she continued going to speech, physical and occupational therapy sessions for four months to get better.  Her mother and mother-in-law came to help take care of Madeline until Jackie was able to multitask and it was safe for her to be alone with her daughter.  She learned how to drive again and was able to return to work full-time that December. 

Today, at age 36, Jackie now has two beautiful daughters, Madeline and Clara, and she lives with a self-described "new normal".  The lingering effects of her stroke cause panic attacks and migraines, speech can still be difficult, she makes lists for everything so she doesn’t forget, and her emotions are heavily impacted by those around her.  But, more importantly, Jackie and Ross are determined to raise awareness that strokes can happen to anyone, at any age, and to help others recognize the risk factors and warning signs.  They are thankful to Jackie’s amazing medical team who brought her back, and for the incredible research and technology that are impacting the lives of stroke patients everywhere.

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Share Your Story - Javan Cruz

Javan Cruz Missouri

Just 5 percent is the chance of survival when a child suffers sudden cardiac arrest away from a hospital. Javan Cruz is among that small percentage.

Back in April, Javan suffered a total of seven sudden cardiac arrests while in his 7th grade classroom.

Thanks to quick action taken by his teacher and school nurse, he’s with us today. Javan credits his survival to the Pioneer Ridge Middle School staff, who performed CPR and used an AED.

Read More Here.

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