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Advocates Raise Awareness with Heart Month Proclamation

AHA Volunteer Advocates North Dakota

AHA volunteers, survivors, and partners joined for a Heart Month proclamation at the Capitol with Governor Dalrymple. Advocates thanked Governor Dalrymple, who is in his last year, for his support in developing a stronger cardiac and stroke system.  Because of strong support from the Governor, we are making an impact in North Dakota.  From 2011 to 2012, nationwide, age adjusted death rates decreased significantly for heart disease – 1.8% and 2.6% stroke nationwide.  During the same time period, in North Dakota, age adjusted death rates for heart disease decreased 22.3% and stroke declined 38%.  tPA use for stroke improved from 33% to over 80%. We continue to have much work to do to improve our cardiovascular health in North Dakota, but with strong support from our elected leaders, we know we can continue progress already made.  Many thanks to our Governor! 

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Exploring New Places is Why!

Meet AHA's Communications Coordinator, Emily Schnacky!

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

My career with the American Heart Association began February 2015 when I joined the team as a communications coordinator. I was quickly introduced to the many issues and policies the American Heart Association is actively working on in the state of Minnesota. Knowing that I could make a difference in the health of the community by sending a simple email to my legislators and spreading the word on social media ignited my passion for advocacy. 

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

Strengthening physical education in schools and creating safe routes to combat childhood obesity and encourage a more walkable community. This is so important because not only does physical activity help children thrive academically and socially, but it teaches them healthy habits they can carry into adulthood.

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

Last year’s Minnesotans for Healthy Kids Coalition lobby day was my first experience meeting with lawmakers at the capitol. I’ll admit, I felt a little intimidated at first, but that quickly changed as the other advocates in my district group were so helpful and passionate about policy change. As a group, we gained support from the lawmakers we met with and left the meetings knowing our voices mattered.

What is your favorite way to be active?

Jogging, hiking, biking, yoga – it’s too difficult to pick a favorite.

What is your favorite fruit or vegetable?

Strawberries

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Bob Elling, New York

Bob Elling is a career paramedic, but has many other “jobs,” including educator, author, and four decades of service as a very passionate American Heart Association volunteer. Bob has served in a number of capacities: Founder’s Affiliate board member, Albany Regional Board of Directors, NYS Advocacy Committee and You’re the Cure network advocate, NYS Emergency Cardiovascular Care committee, Volunteer Leadership Committee, as well as national faculty for Basic Life Support (BLS), Advanced Cardiovascular Life Support (ACLS) and regional faculty for BLS, ACLS and Pediatric Advanced Life Support (PALS).

Three of his career highlights have been serving as the Basic Life Support Science Editor during the development of the CPR and ECC Guidelines in 2005, helping lead the successful CPR in Schools Campaign in NYS that requires all high schools students to learn this lifesaving skill, and as the Medical Editor of the Nancy Caroline Emergency Care in the Streets paramedic text. He has authored/edited 48 textbooks and hundreds of videos and magazine articles for EMS providers.

Originally trained as a medic in the Bronx (Jacobi 3), he has served as a paramedic in NYC as well as the Capital District of NY for 40 years. Bob’s “other jobs” include Clinical Instructor for Albany Medical Center, faculty for the paramedic program at Hudson Valley Community College, and part-time medic at the Times Union Center and Whiteface Mountain Medical Services. 

Bob lives in Colonie and Lake Placid, NY where he enjoys biking, running (he’s completed 31 marathons!), skiing, hiking, and writing.

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Jane Kolodinsky - Good food sells!

Telling legislators that french fries are the most common vegetable served to toddlers, AHA volunteer Jane Kolodinsky urged Senate Health and Welfare Committee members at a recent hearing to implement nutrition standards for restaurant kids meals.

Jane, the chair of UVM’s Department of Community Development and Applied economics, has published research on childhood obesity. Among her findings?  Going out to eat isn’t just a treat for families anymore. Away-from-home food accounts for nearly half of all food dollars spent. Improving the nutrition of that food can make a difference in the fight against obesity.

And does good food sell? You bet. Jane reported to the committee that a recent survey conducted about the nutrition improvements that were made in the food service at the UVM Medical Center found that the hospital now gets 14% of its business from people coming from outside the hospital just for the great food!

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Grace Firestone

Grace Firestone Delaware

Grace Firestone was given an incredible gift--a second chance at life. Just days after her high school graduation, her brother saved her life by performing CPR until EMTs arrived and what she’s done since is extraordinary. Grace understood that her story had the ability to inspire and worked with American Heart Association staff to convince decision-makers that teaching every student hands-only CPR was not only feasible, but necessary. Thanks to her dedication and a two-year effort, all Delaware students will now graduate with the skills to save a life.

In addition to her health advocacy work, Grace is preparing for Fall 2016 entry into medical school, serves on the patient advisory board of Christiana Care Health System and is captain of her club soccer team, a sport she wasn’t sure she could return to. For a woman barely in her 20s, Grace has already left a lifesaving legacy and her work is just beginning.

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Amy Edmunds

Amy Edmunds, Mid-Atlantic Affiliate

Opening doors has been the most rewarding aspect of my volunteer experience. Since experiencing ischemic stroke in 2002, I have been an actively engaged volunteer throughout the Mid-Atlantic Affiliate.

Undoubtedly, the first door to open was my own! It has been an amazing transition to evolve from volunteer to spokesperson. But You're the Cure's comprehensive advocacy training helped hone my message and presentation to enable me to comfortably address the Rally for Medical Research last year to urge Congress to restore National Institutes of Health (NIH) funding. And, it was a treat to meet with AHA's CEO Nancy Brown and NIH's Executive Director Dr. Francis Collins!

Please, join me at hour 1, minute 15 to hear my message.

(Please visit the site to view this video)

For me, You're the Cure has afforded the opportunity to champion issues related to stroke among young adults from a local to national platform. Over the years, I have not only participated in numerous local Heart Walks, HeartBalls, and Go Red For Women events but also statewide lobby initiatives, national taskforces and Lobby Days. And, yes... even to the White House as a briefing attendee.

So, go ahead and open the door to opportunity... for yourself as well as for those you love!

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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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Share Your Story: Tucker Crum

Tucker Crum Iowa

In January of 2015, legislation was passed that requires hospitals to screen newborns for congenital heart defects using pulse oximetry. Tucker is a little boy whose life was saved because of this testing, in fact, he was the first baby in Iowa to be diagnosed with a heart defect using this testing after this legislation passed! Here is Tucker’s story from his mom, Aly:

Tucker was born at Mercy Medical Center North Iowa. Excited family and friends, including his 2 year old sister Rylee, came to visit our healthy, 8 pound 2 ounce baby boy at the hospital each day. Our last night at the hospital Tucker went to the nursery where they did an oxygen saturation test using a pulse oximeter which raised serious concerns about his heart. Tucker was immediately taken to the University of Iowa Children’s Hospital Pediatric Intensive Care Unit where he was diagnosed with Transposition of the Great Arteries, meaning the two main arteries of the heart were reversed. We were told that Tucker was the first baby in Iowa to be diagnosed with a heart defect using the pulse oximetry testing since legislation was passed to have the test done on every baby before they go home. Ironically, holes in Tucker’s heart were allowing the blood to mix and get limited oxygen keeping him alive. Tucker underwent an arterial switch procedure performed by an extremely talented cardiac surgeon by the name of Dr. Joseph Turek. That day was a long and emotional one as our son fought for his life. After several hours, Tucker came out of surgery and his medical team reported that the repair went very well.

Now, at 2 years old, Tucker is doing great! He is extremely active and on-the-go and just full of life. He continues to have great check-ups. We were so blessed that Tucker’s heart defect was caught so early by the pulse oximetry testing allowing for this wonderful outcome and ultimately saving our baby’s life. Tucker is not scheduled for any more surgeries.

 

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Advocate Highlight - Sara Hoffman

Hi my name is Sara and I am 37 years old. This year should have been one of the happiest times of my life. On April 18, 2015, I was married on a beach in Mexico. Like any bride, I spent months planning the wedding and could not wait to celebrate with our friends and family. The shocking part of this story is that I suffered a major heart attack during the flight on my way to Mexico.

I felt fine in the morning and for the first four hours of the flight. All of the sudden I started experiencing burning in my chest, jaw and arm pain. I instantly knew something was wrong. After about 20 minutes of experiencing symptoms, I asked the flight crew to land the plane. I knew that my age and the fact that we were on the way to our wedding could make people think I was just having a panic attack so speaking up for myself felt more important than ever.  I was later told by my cardiologist that I would have died on the plane that day if we had not landed the plane.

We did an emergency landing in Louisiana where I was wheeled into the ER with my wedding dress in tow. I had an Angioplasty and a stent placed in my left anterior descending artery. My heart stopped twice during my procedure and I had to be defibrillated both times. My poor husband thought he was going to be a widower and we weren’t even married yet.  Amazingly, I was cleared to fly to Mexico just two days after my procedure. The day of our wedding was amazing but and I felt so lucky just to be alive and standing there.

We cancelled our honeymoon so I could come home and recover. I had not felt well while in Mexico and ended up getting re-hospitalized the day after we came home. I was in congestive heart failure and was experiencing terrible side effects from my medication.

My recovery has been hard but I am learning so much about heart disease along the way. I knew my father had a heart attack at age of 36, but I can honestly say I never considered myself to be at risk. I was healthy, I used to run full and half marathons, I don’t smoke, and I am a vegetarian. I thought everything I was doing would counteract my family history.  I didn’t understand the power of genetics.

I hope my story can encourage other women to schedule a Well-Woman Visit and talk to their doctor about their family history and personal risk.

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Advocate Spotlight: Karen Dennis

What is your why?

My WHY started off more as a "work thing."  I am a RN and I worked in Cardiac and Pulmonary Rehabilitation/Cardiology.  Working with the AHA was just something that someone from my department did. Don’t get me wrong, I enjoyed it, I just didn’t have much intrinsic motivation WHY then. Then, in 2001, my grandfather died as a result of cardiac problems. From that point on, the WHY was to honor my grandpa, Harold Bork, and to do my part of the work of the AHA so that other families do not have to experience the loss of a loved one due to heart or stroke disease.

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

I have been involved with the AHA since the early 1990’s when I was working as a Registered Nurse in cardiac and pulmonary rehabilitation.  I served on our area Heart Board at the time, as well as helped to organize our McLean Country Heart Walks. Now that I am teaching at Illinois State University, I am able to include my students in the work of the AHA. It is a great way to not only get the word out, but also a great way to get new people involved in the work!

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

I am passionate about keeping and improving physical education and fitness in schools.  Quality daily physical activity is obviously good for our children’s physical health.  Quality education about the physical is good for teaching students about healthy choices. AND now, research clearly indicates that higher level fitness also improves academic performance.  Quality daily physical education can make a difference and improve students’ fitness scores.  During the days of STEM and achievement testing, it makes no sense to me why the first thing to be cut is physical education.  QUALITY physical education should be the first subject to be funded! My children’s most important teacher, I believe, is their physical education teacher, because that teacher is teaching them how to be active and healthy for life.  If my child becomes sick as an adult with a chronic disease due to disuse, all the science and math knowledge in the world is meaningless.  With QUALITY daily physical education, my child is armed with knowledge and experiences to help them to choose daily physical activity and healthy choices for the rest of their life!

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

My favorite advocacy memory would have to be taking my senior Illinois State University Exercise Science students who were enrolled in Kinesiology and Recreation 307 – Exercise in Health and Disease class to Springfield to meet with their state legislators. Anne Simaytis and Rae O’Neill, along with fellow advocate Scott Saxe provided my students with an absolutely outstanding day of information and outreach.

What is your favorite way to be active?

I run!! I absolutely love it – at least running outside. I struggle in the winter when it gets cold out because I am stuck with the treadmill. But for me, running helps me focus on my day and allows me to put everything in perspective.

What is your favorite fruit or vegetable?

I would have a tough time trying to answer this one! I grew up on a farm, and my mom, Alice Monk, was (and still is) an incredible gardener! I grew up with great variety of all kinds of wonderful vegetables.  I really love them all - especially if they’re from mom’s garden!

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