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Youth Advocate Spotlight: Jackson Walters

Jackson Walters North Dakota

Advocates from across the nation traveled to Washington DC to talk to their lawmakers about the importance of school nutrition in the fight against childhood obesity.  The North Dakota delegation had the opportunity to visit with Senator Hoeven, Senator Heitkamp and Congressman Cramer.  Youth Advocate Jackson Walters and his mom, Amy, participated in a full day of advocate training in preparation for our day on the Hill.  We caught up with Jackson upon returning from Lobby Day and asked him to share some of his experiences with our readers. 

Q: Jackson, I understand you and your Mom recently went to Washington DC with the American Heart Association.  How exciting!  What was the purpose for traveling to our national’s capitol a few weeks ago?

Jackson: We went to meet with our senators to talk about school lunch and trying to improve the health of ND kids.

Q: School Nutrition seems to be hot topic in our schools, on TV, with our congressional leaders, etc.  Why do you think having healthy meals in school is important for kids your age? 

Jackson: I think that kids like healthy foods and it makes us feel better when we are at school.

Q: You must have learned a lot while in Washington DC!  Tell me a couple of things that really made an impact on you, and how you have shared that information with family or friends since you returned home?

Jackson: I learned that our senators have a lot of people asking them to do different things and it is important that we talk with them and tell them what we think.  I want to help the cooks at my school so it is easier for them to make healthy foods for our lunch. Lots of kids don’t get healthy meals and home so it is really important that school lunch is healthy.

Q: What can kids your age to do to stay healthy and strong for your future? 

Jackson: Be active, play sports, don’t play too many video games and eat healthy foods.

It's not too late for YOU to get involved with the American Heart Association and advocate for healthy school meals.  For more information on how you can be involved, contact Pamela Miller, Regional Grassroots Advocacy Director, Pamela.miller@heart.org

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Lori Valencia Greene

Lori Valencia Greene, Maryland

Lori Valencia Greene is a woman of many hats: mother, daughter, friend, student, and an advocate for change in her community. She was surprised at the young age of 47 to also find herself a stroke survivor!

Lori has always had a desire to make a difference. Because of this she volunteered in her native District of Columbia since she was a teenager.

Lori first became involved with advocacy work in 1985 when she took a job as a legislative assistant on the Hill where she worked for 10 years, including two stints as Legislative Director. She fell in love with the work and eventually took jobs lobbying for Planned Parenthood Federation of America, the National Black Women's Health Project, and the American Psychological Society (APA). While working for the APA, Lori was an advocate for a bill that would eliminate race and ethnic health disparities. One of her proudest moments was seeing this bill turned into law. She says, “I like advocacy work because I feel like I am making a difference, particularly when I am advocate for people who can't advocate for themselves.”

Lori’s stroke experience brought her many challenges, but it also gave her a new drive for advocacy work. “After going through the whole process I realized that there is still a lot of work to be done. I had great care, but there were things that could have been improved and there is still a lot that isn't known about why people have strokes.” After her stroke, Lori stumbled on the American Heart Association web page where she happily signed up for advocacy volunteer work, and has been an active advocate for You're the Cure ever since. She is currently serving on an advisory committee for You’re the Cure.

Of all of the experiences that Lori has had, she says she is most gratified by her advocacy work. Lori’s advice to advocates is to have passion and patience. “Don't give up. Just don't give up. Its' easy to give up, but don't do it. The people you are advocating for need you.”

Are you passionate about advocacy? Tell us your story HERE.

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Sarah Porter

When I had a stroke four years ago, I was a healthy, happy student at the University of Maine. One minute I'm sitting in class, and the next my face started seizing up.  And then I couldn't understand what people were saying. Concerned family members took me to the ER, where I was accused of faking my symptoms in order to escape my finals. Fortunately, my brother spoke up for me, attracting the attention of another clinician who recognized what was happening.  I was incredibly fortunate to have made a full recovery, but I am also aware every day of how easily things could have gone the other way. 

Having a stroke changed my life. I was able to access the vital services and medical care that I so desperately needed, but I know there are so many families who don't have the financial resources to aid in recovery.  And so many people suffer permanent disability from strokes just because no one around them knew what was happening.  Despite the setbacks of a second stroke and brain surgery, I recently graduated from Columbia University with my Masters Degree in Public Health. My survival has given me a new purpose in life.  I want to use my public health education to make sure every stroke victim is as fortunate as I have been.

Our world is full of the unexpected, and the American Heart Association's mission helps to minimize some of those unanticipated setbacks from heart disease and stroke. I cannot thank you all enough for allowing me the opportunity to support the fight to raise awareness, reduce stroke, and save lives.

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Steve Goulet, Rhode Island

We recently had the pleasure of meeting an amazing new advocate!  Steve Goulet is a cardiac arrest survivor - and now he's on a personal mission to save lives with CPR.  Check out his incredible story in The Providence Journal:

Photo credit: The Providence Journal

http://www.providencejournal.com/article/20150604/NEWS/150609610 

A story of revival: Woonsocket EMT's cardiac arrest becomes mission to save lives with CPR

After a long day of work at his garage in 2006, Steven Goulet sat down at the bar with his buddy and ordered a cold beer.

He didn't have so much as a sip. 

The moment the drink arrived, his eyes rolled back and he slumped over, his head hitting the bar. 

Goulet doesn’t remember any of what happened next — not the nurse who rushed to his side, not the frantic chest compressions she and others performed, not the 22 minutes that passed before his pulse could be restored. At 27, he was in full cardiac arrest.

Even if Goulet survived, the doctors told his family as he lay comatose in the hospital, he’d probably be severely brain damaged.

But when Goulet finally came to, not only was he his old self, but he quickly learned that CPR had likely saved him. It was a life-changing experience.

Since then, Goulet, eager to save other people's lives, has become an EMT and performed CPR on countless patients.  He's also sought to encourage everyday people to learn basic CPR skills.

“It’s amazing,” he says after recounting what happened to him in the bar nine years ago. “If nobody knew how to do CPR, I would have never made it.”

Nurse wouldn't give up

Born and raised in Blackstone, Mass., owned a car repair business in his hometown before his life would forever change. It meant working long hours. When his friend stopped by the garage close to 11 p.m., he was surprised to see Goulet still at work. 

“He said, let’s go grab a beer,” Goulet said. 

On reflection, Goulet said he was fortunate he hadn’t been left alone — and even more fortunate that a nurse was at the bar when they got to the Millerville Club. When his buddy yelled for help, she began CPR and, when she tired, got others in the bar to help take turns. 

Again and again they checked for a pulse. Nothing. It went on for about 15 minutes. 

“People said, ‘Stop, stop. He’s going to be brain dead,'" he later learned. But, he said, “She just kept going.” 

Town paramedics arrived after about 15 minutes. It was another seven minutes before they restored his pulse. Brain damage can occur after as little as three minutes without a pulse and death in as little as four to six minutes, according to the National Library of Medicine. 

Goulet initially went to Landmark Hospital in Woonsocket before being transferred to Rhode Island Hospital. Meanwhile, an emergency room physician at Landmark, who after going home puzzled over what caused Goulet’s cardiac arrest, stumbled upon something in a medical text that he thought was the answer.

It was Brugada syndrome, an electrical disorder in the heart that can cause lethal arrhythmias and is sometimes genetic. He called doctors at Rhode Island Hospital and, although Goulet had no family history of Brugada, his suspicions were later confirmed. 

Surgeons implanted a defibrillator in Goulet's chest to shock his heart when the abnormal ventricular rhythms occurred. But because they were happening so frequently, he later began taking a medication that dramatically reduced the need for those shocks.

A new life

Returning to running his garage was too stressful. So Goulet, who is married with children, set out to find a new career. After learning that his condition prevented him from becoming a truck driver, he began taking EMT courses, inspired by his own experience. 

“That’s why I wanted to be an EMT. I felt like I’d have more compassion for people and what they were going through,” Goulet says. “If that happened to someone else, I wanted to help them the way people were able to help me."

Eventually, he earned an “EMT-Cardiac” license. After volunteering and working part-time for the Chepachet Fire Department, he took a full-time job in Woonsocket with Medtech Ambulance. 

Coincidentally, on Goulet's first day on the job, he was assigned to ride with Michael Marcoux, who was the leader of the team of paramedics that helped save his life. As a deputy fire chief with the Blackstone Fire Department, Marcoux joined two other EMTs in taking over resuscitation efforts from the nurse, bar customers and a police officer who arrived moments earlier. 

“It was an awesome team effort,” says Marcoux. When it comes to cardiac arrest, “very, very seldom do you have an outcome like Steven.” 

Since becoming an EMT, and joining a busy ambulance service, Goulet figures he’s administered CPR hundreds of times. 

“I’ve saved lives and gotten them to the hospital. Even if I hadn’t gotten a pulse back … [the emergency room] had a viable patient to work with,” he says. “ It’s a passion now. I’ve never been happier than what I’m doing now.”

 

 

 

 

 

 

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Volunteer Peter Evans Found Writing a Letter Makes a Difference

As the old adage says, “It’s the squeaky wheel that gets the grease.” Advocacy helps us to speak up and out about issues that are important to us.  The more we do, the more our message spreads. As volunteer Peter Evans found out during our sugary drink campaign, speaking up, even on paper, can have an impact.

Evans wrote a letter to his local paper the Brattleboro Reformer emphasizing the importance of passing an excise tax on sugary drinks that would reduce consumption of these drinks and help fight the obesity crisis.

"We have only a few real options," Evans wrote. "Continue on our current course and let the cost of obesity continue to spiral, or take tangible, evidence-based steps towards improving healthcare through policy and prevention."

The paper agreed and wrote an editorial supporting the effort, “Sugary Drinks: Tax the heck out of them.” You can read it here. http://www.reformer.com/opinion/ci_27585726/our-opinion-sugary-drinks-tax-heck-out-them  And Peter’s message spread to hundreds of Vermonters.

You too can be a catalyst for change. Though the sugary drink excise tax did not pass this year, obesity is still a crisis and sugary drink consumption is far too high. Help us continue to spread the word by writing a letter to your own newspaper. 

Tell them a new study by the University of North Carolina reported this month that sugary drink sales dropped 6% on average after a sugary drink excise tax was implemented in Mexico. We should give it a chance here. Click here for a list of Vermont newspapers and the emails where you can submit your letter.

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Advocate Spotlight: Corrie Kielty

Corrie Kielty Nebraska

Being a mom and now a grandmother, involves much more than day to day mom duties.  It means doing everything I can to make Nebraska, my lifelong home, a better place for children. Hopefully I’ve modeled Mahatma Gandhi’s profound advice to “be the change you wish to see in the world.”

Tobacco has gripped our family and broken our hearts in so many ways.  I began smoking at 11.  After several heart surgeries and too much pain, we watched my grandfather die a painful tobacco related death.

Fortunately, many in my family battled our addiction and won. I quit smoking at a young age using many of the resources now available to help break that addiction. Less people now use tobacco than ever before thanks to successful public health policies passed by American Heart Association.

But too many Nebraskans are still caught in the grips of tobacco addiction.  Today 20% of adults and 15% of youth smoke. It is essential that we continue to reduce these rates. There are 2300 people dying from smoking attributable deaths in Nebraska each year.

We know there are successful policies that have kept tobacco out of the hands of children.  Increasing the cost of tobacco, banning smoking in the workplace and other other successful policies have worked – but the work isn’t complete.

I will continue to participate in the American Heart Association’s Lobby Day, contact my elected officials about action alerts and talk with public officials about health policy. I do this because I know that nine of 10 people who smoke, started before the age of 18. If we can keep children from smoking, they won’t become an adult smoker. 

Working together we can keep children from smoking. We can keep children from exposure to second hand smoke. We can make those changes we wish to see in the world so that all of our children and grandchildren have a better place to live.

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Advocate Spotlight: Amber Rost

Amber Rost South Dakota

As an active, busy mom of two school-age girls, I try very hard to ensure my family is getting the good nutrition they need each and every day.  It can be a challenge not only to put nutritious meals on the table every day, but also to combat the marketing of junk food that my girls are exposed to every day.  I try to make the healthy choice the easy choice in our home.  That is why it is important to me that our schools make the same commitment. 

I know that obesity is a growing concern among our youth.  I also know that the health consequences of obesity in children are staggering.  Obesity is a major contributor to chronic disease such as diabetes, heart disease, cancer and other illnesses.  That’s why learning good nutrition habits early is so important.

Our children consume 35% - 50% of their daily caloric intake at school, where they are often exposed to junk foods and sugary drinks that have little nutritional value.  Our kids are constantly being inundated with junk food marketing and healthy food choices are sometimes hard to find. 

I encourage Congress to reauthorize the child nutrition Healthy, Hunger-Free Kids Act to ensure that our schools continue to make improvements in the nutritious value of school meals.  Not only does healthy school nutrition help combat childhood obesity, but studies have shown that kids perform better in school when they have good nutrition. 

I know there have been challenges to meeting the nutrition guidelines of the Healthy, Hunger-Free Kids Act, but let’s not give up on our children’s health.  Let’s work together to ensure the healthy choice is the easy choice when it comes to school meals.

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Share your Story: Andrew Christensen

Andrew Christensen  Michigan

I was born on May 3,1990 with a rare heart condition called Truncus Arteriosus with ventricular bi septal defect, a condition that effects only 1% of children born with congenital heart conditions. It means that one large blood vessel leads out of my heart instead of two separate vessels coming out of the heart. Also, the two lower chambers of the heart are missing a portion of the wall that divides them. As a result of truncus arteriosus, oxygen poor blood that should go to the lungs and oxygen rich blood that should go to the rest of the body are mixed together. This was found minutes after my birth when I experienced what is called “blue baby syndrome” and was rushed into heart surgery at the University Of Michigan Mott Children’s Hospital.

The first surgery I had to repair the truncus was successful, but I did require two more open hearts within my first two weeks of life. This lead to me never living quite a normal life. Being fed through tubes as an infant, doctor appointments, medicine to take, and never being able to play sports like a normal child. I did have to have another open heart procedure at the age of 8, causing me to miss most of my second grade year at school. This was the first surgery I remember, but within days after returning home my mother caught me outside throwing a football and running around the yard. My childhood remained pretty normal with only a few minor bumps in the road with my condition: an Amplatzer placement when I was 11 years old to fix a leaking valve in my heart and a heart cath followed, and was told I was not going to have to experience another open heart procedure until my mid to late 20s.

I wish that was the case.  During baseball practice in junior high I suffered a major Tachycardia, a resting heart rate exceeding 100 bpm. Mine was 285 bpm when I arrived at the ER, but was much faster than that when it initially happened. I arrived at the Greenville emergency room nearly an hour after my tachycardia started and was rushed into a room where the medical staff franticly started an IV and hooked me up to a heart monitor; they were shocked to see that I was still alive and walking with such a fast heart rate. They administered a medicine that stopped my heart in order to restart it to a normal rhythm. I flat lined for about a minute and a half. I was clinically dead for that 90 or so seconds, experiencing an out-of-body experience in which I could not hear, feel, or see anything in the room that was in. The nursing staff could not start my heart back up right away due to the fact that it was simply too tired to work anymore. I eventually opened my eyes to see my mother five inches from me, tears running down her face and a blank expression for what she just saw happen to her son. When I awoke my heart rate was a calm 75 bpm and I felt tired, but normal.

After this event I was transported back to the University of Michigan for two more open heart surgeries, one ICD (implantable cardioverter defibrillator) placement, a collapsed lung, and 45 pound weight loss. After about two months I was able to return home with my family. However, I did not return as my old self. I brought home not only physical scars from my ordeal, but mental scars too. I have since been diagnosed with PTSD, major depression, and anxiety along with panic attacks and nightmares about having another heart attack. I am, however, getting better and working daily to regain control of my life.

That is why I want to be proactive in helping others with heart conditions, and those who have had similar experiences.  I have felt alone for a long time, but I know I am not, and this website is proof of that.  I am going to dedicate my life to helping others with congenital heart defects: children, adults, anyone who needs it.  I am very glad to be able to share my story with all of you and the American Heart Association and I hope to be more involved in the future.  I'm excited about where this journey of my life will take me and the people I will meet that will inspire me.

Thank you for reading my story,

Andrew

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Michele Coleman

Michele Coleman, District of Columbia

“This is not supposed to happen,” uttered Michele Coleman, remembering vividly the moment that cardiologists told her that her newborn baby was being rushed into open-heart surgery at seven days old. Little Dylan is Michele’s youngest of two sons, and quite the trooper. A resident of Washington, DC and planning to deliver Dylan there, Michele thought she had everything all mapped out. However, her OBGYN had different plans. Michele’s first son was delivered at a hospital in nearby Silver Spring, MD, and that is where her doctor wanted to deliver Dylan. So when the time came, Michele and her husband packed up their things, and off to MD they went - only a few miles away.

Delivery went smoothly, and doctors scurried off to take Dylan for his routine newborn screenings. All of the screening results came back normal, except for the pulse oximetry test. While waiting for doctors to explain what that meant, Michele had no reason to be overwhelmingly worried. Seven hours passed as they waited for a cardiologist to commute from Fairfax VA, to Silver Spring MD. Dylan was then taken for an echocardiogram, which revealed he was suffering from multiple critical congenital heart defects. Michele and her husband were dismayed to learn Dylan needed to be prepped for open-heart surgery.

“Plumbing issues, that’s how I like to describe Dylan’s heart,” simplified Michele. Dylan was born with an Interrupted Aortic Arch, Aortopulmonary Window, and a Patent Ductus Arteriosus. If not caught by the pulse ox test, Dylan would have passed away within 48 hours of discharge.

“In some ways, it's fate,” says Michele, thinking about how fortunate it was she gave birth in MD. At the time of Dylan’s birth in December of 2012, the state of MD had just passed a law requiring pulse ox testing for all newborns. Dylan was the first baby in MD since the law had passed to have had an abnormal pulse ox test reveal critical congenital heart defects requiring immediate treatment. Washington DC, where the Colemans live, had no such requirement.

Since then, it’s been Michele’s dream to not let another newborn leave the hospital without receiving this crucial lifesaving screening. She became a passionate You’re the Cure advocate with the American Heart Association, helping to gather and prepare other families to support the pulse ox issue as it came before the DC Council, and testifying before the committee hearing. She also works with the Pediatric Congenital Heart Association and leads the DC Chapter of Mended Little Hearts, a support group that provides encouragement and education to children and parents suffering from congenital heart defects.

Through the extraordinary advocacy of Michele and other parents like her, the Healthy Hearts of Babies Act was unanimously passed by the DC Council in June of 2015, and will become an enacted law in the fall. As a result, every newborn in the nation’s capital will be assured to receive heart defect screening with pulse oximetry prior to leaving the hospital.

Having lived through this experience, Michele has made it her life’s mission to educate parents, teach them what resources are available, and to decrease preventable deaths from critical congenital heart defects.

Michele brought Dylan with her to testify for the bill.  She says, “Having the pulse ox bill pass in DC is quite a victory. It made me proud to be able to stand up and say, this is my story.”



 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


 



<Many thanks to AHA You're the Cure intern Lauren Spencer for her help in developing this Advocate Story.>

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Alyson Whitaker, Georgia

Over the past five years, we have gained new sponsors and some have been with us the whole time, helping Alyson to reach her goal each year by participating in Jump Rope For Heart. As you may know Alyson does Jump Rope For Heart not only because she herself is a heart patient, but to honor her little brother Cole. With contributions from her sponsors no matter how big or small we know they have helped to save a life like Alyson and Cole. We have so much gratitude for each of her sponsors and could never say thank you enough.

We lost Cole on August 14, 2010 from Hypoplastic Left Heart Syndrome and Total Pulmonary Venus Return; he only lived for -nine short days. As times change so does medical technology. With each donation received we know it helps to advance technology so other parents and siblings will not have to suffer the loss of their child or brother/sister from a congenital heart defect like Cole. Each year, our little nine year-old miracle Alyson, gives back by participating in Jump Rope For Heart, she says, "This is just a small thing I can do to honor my little brother and other children like him and me."

To date, Alyson has raised a total of $6,979 for Jump Rope For Heart and she refuses the gifts offered for her for fundraising. Each year she not only wins the honor of raising the most money for her school in Locust Grove, but for Henry County. Next year Alyson has set her goal high. She wants to be able to raise the most money for the state of Georgia. To Alyson this is not a competition but an honor for her to be as young as she is and to be able to say, “I made a difference in a heart patient's life.” Plus, she is helping to save someone like her brother Cole who wasn't given an opportunity at a long life. 

Read more about Alyson's story here on YouretheCure.org.

-Written by Alyson's mother, You're the Cure advocate Paula Whitaker.

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