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Volunteers Embark on a Road Trip with Heart!

Texas advocates embarked on an epic road trip in August of 2016, traveling across our big state in search of Congressional supporters and cosponsors, and thanking others for their decision to support our federal level advocacy priorities in the 114th Congress. During the trip we kicked off our boots and met with:

Congressman Marc Veasey – Ft. Worth (July 21). Meeting with the Congressman were volunteers Tara Robinson, Denise Smith Ladd, and LaShanda A. Davis, accompanied by staff member Aschelle Morgan.

Congressman Blake Farenthold – Corpus Christi (July 28). Meeting with the member was volunteer Carol Scott, along with staff Erin Wilder (Corpus Christi Executive Director) and Advocacy Team member Kaitlyn Murphy.

Congressman Sam Johnson – Plano (August 11). Meeting with Congressman Johnson’s staff were volunteers LaVera Caston, Beatriz Champagne, Towry Barnard, and Elaine Bullard. They were accompanied by Grassroots Director, Victoria Nelson.

  

Congressman Joe Barton – Arlington (August 17). We met with staff from Representative Barton’s district office, alongside volunteers Connie Kerr and Ruma Brown. Victoria Nelson also tagged along for this one.

 

Congressman John Carter – Round Rock (August 25). We met with the Congressman in this meeting, and included volunteers Andy Martinez, JJ Parker and Jeff Parker. They brought along AHA Local Policy Manager, Kelsey Bernstein.

Congressman Beto O’Rourke – El Paso (August 26). We wrapped up our Texas road trip with another member meeting with Congressman O’Rourke. Volunteer Annette, Torres joined Voices For Healthy Kids Campaign Director, Christopher Walker.

  

 Thank you to You're the Cure advocates who joined us on this epic #RoadTripwithHeart! Check out the recap video below:

(Please visit the site to view this video)

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More Adventures is Why!

Meet Jenni Isenhower, Minnesota's Heart Walk Coordinator!

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What brought you to be an advocate for the American Heart Association?

I was first drawn to the American Heart Association because it seemed to have its hand in a lot of different things. I’ve learned that the American Heart Association is not just trying to cure heart disease, they are raising funds, providing resources to survivors and caregivers, encouraging healthier lifestyles, and researching new ways to prevent, detect and treat cardiovascular disease and stroke. As well as educating lawmakers, policymakers and the public to advocate for changes to protect and improve the health of our communities. Being an advocate for something that is so needed is why I’ve stayed.

What issues or policies are you most passionate about and why?

I grew up in a very small town surrounded by corn fields so I am passionate about Systems of Care. Often, a lot of the System of Care legislative / doctor talk goes over my head. However, I know that statistics show that minutes matter and can drastically change the outcomes for victims of a STEMI Heart Attack. I love the idea that anyone in the state of Minnesota, even those who are surrounded by corn fields, will get the fastest and best care, anywhere in the state. “Where you live, should not determine IF you live.”

What is your favorite advocacy memory or experience so far and what made it great?

Attending the Minnesotans for Healthy Kids Coalition Day at the Capitol has been my favorite experience so far. It was astounding to see all of the people gathered together to be the voice for tiny humans to make a difference in their lives and the lives of future generations.

What is your favorite way to be active?

Anything that involves a new adventure… biking, hiking, kayaking, climbing, snowboarding, twirling!

What is your favorite fruit or vegetable?

Watermelon

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Meet New Louisiana Advocacy Committee Chair, Tamara Sabine

Our 2016-17 Louisiana Advocacy Committee recently named Tamara Sabine, of Baton Rouge, to lead the committee this year. Tamara served on the state advocacy committee last year, and has been an active volunteer for the American Heart Association (AHA) for 10+ years. She looks forward to stepping in this leadership role.

Occupation: Federal and State Grants Coordinator, Office of the Mayor-President, City of Baton Rouge

How long have you been a volunteer with the AHA and in what capacity?  More than 10 years on the Louisiana Advocacy Committee

Who or what inspires you to help and volunteer your time to the work of the AHA?  My children – A.J. (15), Lauren (13) and Oliver (10). I first started volunteering with the AHA when asked by Terri Broussard, Government Relations Director at the time, to assist in the smoke-free air campaign to advocate for tobacco-free zones in public buildings, including restaurants. I’ve always chosen restaurants that are non-smoking, or have well contained smoking areas to take my family to. I want my children to grow up in clean air, not around smoke because I know the dangers of secondhand smoke on children.

What heart-healthy issue is most important to you and why?  Healthy eating. Too often families choose foods based on cost – how cheap it is – and not on how nutritious it is. So, children and adults don’t get enough nutrients, vitamins and minerals, and get too much of fats, sugars and chemicals. I strive to feed my family as many fruits, vegetables and lean meats as I can afford, and I truly understand how difficult that can be for families, but it has to be done – or our children will have to deal with obesity, diabetes and heart disease.

What are two ways you keep yourself healthy?  I eat the healthiest diet I can – lots of fruits and vegetables every day and I try to walk every evening for 30 minutes.

How is your community healthy that makes you proud?  My community is working on getting healthy. There is the bike/walking path on the levee, the Red Stick Farmers Market on Saturday mornings, more restaurants & public areas in Baton Rouge are smoke free due to AHA’s efforts with the legislature.

How do you stay updated on current public policies in your state?  I read the AHA emails that are sent out and respond as needed.

If you could help advocate for one change in your state, what would it be and why?  That’s a good question. I’d say more bike/pedestrian-friendly walkways, or more support for healthier school lunches. It’s gotten a little better, but there’s still room for improvement.

Do you have a favorite AHA/ASA event you annually attend?  What is your motivation to participate?  I love the Go Red For Women event, and attend when I receive enough notice. I don’t mind fundraising for the AHA, but I need more notice than to hear about the event on the news the morning of the event. I also enjoy attending Lobby Day at the legislature, when my schedule allows.

Have you attended a state or federal lobby day on behalf of the AHA?  If so, please briefly explain your experience.  Yes, I have attended the state lobby day numerous times, I enjoy being able to chat with legislators about what’s needed in regards to tobacco-free living, healthy meals for kids and first aid needs in the state. I have not attended a federal lobby day, but welcome the opportunity to.

What have you learned in your time being a You’re the Cure advocate?  If everyone pitches in, and does one little thing, we can change our city, our state, our nation, our world. I truly believe that.

Why would you tell a friend or family member to join You’re the Cure?  I would tell them to join You’re the Cure to stay abreast of what’s going on in the legislature and in Congress regarding health-related issues, because heart disease and other health issues eventually affect us all.

Tell us one unique thing about yourself.  I’ve lived in Baton Rouge all of my life, but was born on a military base.

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Candida Akins - Madison, Florida

Guest Blogger: Candida Akins

I gave birth at 32 weeks to two beautiful babies on July 3, 2005.  Shortly after giving birth, I became very ill. I stayed in the hospital for seven days with a high fever and high blood pressure, drenched with sweat. The doctors tested me for everything because they did not know what could possibly be wrong; they even thought I had hepatitis at one point because ALL of my blood work was abnormal.

On day six, the fever disappeared and I was discharged on day seven. I went home, but I was still sick. I tried to do my best as a new mother, but I just could not do anything without feeling sick. I began to feel as if I could not walk very far without having shortness of breath. My body was swollen and I could not sleep at night. I would jump up during the middle of the night gasping for air because I could not breathe.

I knew something wasn't right. Finally, I called my OB-GYN and my family physician. I went to see both of them and I made several trips to the local emergency room to only be diagnosed with postpartum depression. I felt so sad because I could not enjoy my babies like I wanted to. I was in so much pain that I could not hold my babies for very long. By this time, I was barely making steps without shortness of breath, I couldn't eat without vomiting (busted a blood vessel in my eye because of severe vomiting), and my legs were severely swollen, along with my belly. 

After convincing someone at Tallahassee Memorial Hospital (TMH) that I was not depressed, I finally was evaluated for possible congestive heart failure.  I was seconds away from dying by now!  I was home for a month suffering before I was initially diagnosed with Post-Partum Cardiomyopathy (PPCM).  My body was shutting down completely, and I was in so much pain.

Once I made it to TMH for an evaluation, I was immediately taken for testing.  The first test was an echocardiogram.  My EF was 5-10 %( normal range 60-65%)!  I had a heart murmur and I was in congestive heart failure.  My family immediately rushed to the hospital to be with me.  They were terrified because they had watched me for an entire month going through phases of death.  It was a sight to see, especially by my loved ones.

I was immediately admitted to ICU because I was in critical condition.  It was not clear if I would make it.  I remembered being placed in ICU and given medication that night.   I also remember seeing a bright light for hours.  I am certain it was God!  He was watching over me and healing my body.  I was 140lbs that night, but that morning I was 120lbs.  I lost 20lbs of fluid overnight. 

The doctors could not believe that I was improving so soon and healing without any complications.  Eventually, I was well enough to go home.  I was referred to a cardiologist in the hospital and I was scheduled to meet with him periodically to monitor my heart problem. 

Six months passed and I received the news from my doctor that I was not improving as expected, and I would possibly need an implant.

 I went to my appointment and I felt confident that I would fight this disease.  I was still taking my medicine and suffering from the leg fatigue and pain.  My doctor at Mayo Clinic took me off the eight meds down to two per day. 

He looked at me and said, "I am going to do everything that I could to help you heal".  I was so afraid and sad because I was so young and experiencing this type of illness and crisis. 

One year passed and I was still here on earth with my babies. My church was praying for me as well as my family and friends.  My pastor speaks of this today.  He often talks about how the church was fasting and praying for my healing. 

Today, ten years later, I have another set of twins and my EF is 55-60%.  I am still taking two meds per day and I am healthy!  I did not have a reoccurrence with my second pregnancy, but my EF declined a little I made it through delivery without any complications.  God knew exactly what He was doing for me.  My first doctor told me I would die if I had more kids, but God wasn't ready for me.  I believe there is a purpose here on earth for me.  I will graduate from college next week with a bachelor's degree after all.  Ten years ago I fought for this moment to share with someone else.  I fought for my life to raise my kids and raise awareness!  To all of the PPCM mommies, keep fighting and keep the faith!

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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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New Yorkers Attend White House Briefing

On Friday, September 9th, several New York advocates participated in an event sponsored by the White House, titled "Making Health Care Better Series: Cardiovascular Health."  The day-long forum offered an opportunity for volunteers to directly witness the impact of the American Heart Association's mission. 

The group was invited on a special tour of the White House prior to the briefing which provided an exciting glimpse into the history of the Presidency.  You can see many highlights from the tour on the American Heart Association's social media feed by searching with the tag #HeartAtTheWH.

In addition to the tour, the group joined advocates from across the country for a robust overview from our nation's leaders in heart disease and stroke prevention, care and treatment.  Presenters included Dr. Tom Frieden, Director of the CDC, Dr. Gary Gibbons, Director of NHLBI, Dr. Nancy Lee, Assistant Secretary of Health, Dr. Shari Ling, Deputy Chief Medical Officer for the Centers for Medicare and Medicaid Services and Debra Eschmeyer, the Executive Director of the First Lady's "Let's Move" initiative. 

The New York delegation was also briefed by national leadership from several organizations who have a vested interest in our mission against heart disease and stroke.  The American Heart Association's own CEO, Nancy Brown, presented on the progress made so far in the effort to promote health across the country.  She was joined by executives from the Campaign for Tobacco-Free Kids, YMCA USA, WomenHeart, the Horizon Foundation and Emory University.

With all of these impressive leaders in one room, perhaps the most impactful presentation was from a panel of heart disease and stroke survivors.  These personal stories of survival were at once inspiring and motivating.  While we have come a long way in our mission, there is still a lot of work to be done.

We are grateful for the many volunteers that attended from across the country. New York was well represented by:

* Annette Adamczak - Volunteer Advocate and one of New York's Premier Voices in Support of CPR & AED Training

* Dr. Mitchell Elkind - Professor of Neurology and Epidemiology, Fellowships Director, Department of Neurology, Columbia University

* Liz Elting - CEO, TransPerfect and New York City Go Red For Women Leader

* Janice Hall - Senior Vice President, Global Sales Capability at The Estée Lauder Companies Inc. and NYC Go Red For Women Corporate Chair

* William LaForte - Real Estate Attorney, Trevett Cristo Salzer & Andolina P.C. and Chair-Elect of the Founders Affiliate Board of Directors

* Wendy Mono - Volunteer Advocate and Chair Emeritus of the New York City Advocacy Committee

* Dr. Cheryl Pegus - Clinical Professor of Medicine and Population Health, Director, Division of General Internal Medicine and Clinical Innovation, Associate Chair for Clinical Innovation, NYU School of Medicine                    

* Dr. Stacey Rosen - Vice President, Women's Health, Katz Institute for Women's Health at Northwell Health and NYC Go Red for Women Medical Chair

The American Heart Association is grateful for the support of these wonderful advocates.  We look forward to putting the lessons learned at the White House to good use for all New Yorkers!

Photo Credit: Stu Mono

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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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Advocate Highlight - Turner Prewitt

Turner Prewitt was given the “gift of life” when he received his new heart in August of 2008. His firsthand experience with heart disease has led Turner to become a dedicated volunteer with the American Heart Association.

Turner originally became involved by participating in our annual Heart Walk, eventually forming his own team. He participated in his first Heart Walk in 2009 and by 2014 his team had 122 walkers and they raised $10,000 for heart disease and stroke research.

His dedication didn’t stop there, in search of other ways to give back, Turner discovered the advocacy branch of our organization. Turner has become a dedicated You’re the Cure volunteer. He has attended our annual Washington State Advocacy Day since 2012. With the help of Turner and advocates like you, Washington passed lifesaving legislation in 2013 that ensures all Washington high school students will receive hands on CPR training. Turner also lent his voice in 2015 to help pass a bill that ensures all newborns in Washington are screened for heart defects with a simple test called pulse oximetry.

We want to thank Turner for everything he does for the American Heart Association. It is with volunteers like Turner and you that we accomplish the important things we do to improve quality of life in our state.

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Advocate Spotlight: Cassandra Welch

What brought you to be an advocate for the American Heart Association? 

I wanted to get involved with American Heart Association, because I have hypertension and members of my family have heart disease.

 

What issues or policies are you most passionate about and why? 

Hypertension, Stroke and Cardiac Arrhythmia

 

What is your favorite advocacy memory or experience so far and what made it great? 

Working the American Heart Association advocacy booth and passing out information on the importance of daily physical education in schools at several events.

 

What is your favorite way to be active? 

Providing information about how members of my family have dealt with hypertension, strokes, atrial fibrillations, and encouraging children & adults to increase their exercise time.

 

What is your favorite fruit or vegetable? 

Spinach

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