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My Story: Jimmy Leiter

Jimmy Leiter Deerfield, IL

I was getting ready to play football during my senior year of high school.  I had to see my family doctor to get my physical done, and because of a heart murmur and some other heart issues from when I was younger, the doctor insisted I get an echo. He told me that he wouldn't sign-off on my physical until I got an echo done. After a few tests they determined I have a serious heart defect called hypertrophic cardiomyopathy also known as HCM. So I was put on major physical restrictions which included no football. I decided to get another opinion done, at the children's hospital in Chicago just before my 18th birthday.  I had a bunch of tests done including an EKG, echo, stress test, and my least favorite, a heart MRI. And unfortunately the first doctor was right, I have HCM. I was so heart broken and very upset. My mother was in shock.   She had told the doctor that I had no symptoms and the doctor looked my mother right in her eyes and said the only symptom is dropping dead. I had to quit football which was the hardest thing to do, but my coach didn't let me go that easy.  He decided to make me team manager. I accepted the offer and even though I couldn't play, I could help. It wasn't easy sitting on the sidelines watching the others play, but I did know that God had a reason for it all.


Over the next couple of months I started getting really depressed because of not being able to do much of anything, I felt as I was on house arrest, but worse one wrong move could kill me. After high school I decided to follow my other dream of being a computer tech, since I couldn't do college ball or the military. So I attended Robert Morris University and finished my Associate’s within degree within two years.  I had a great job, but still had the bad heart. After some time and more life transitions, I had started noticed some major physical changes. I was getting shortness of breath, tiredness, and dizziness. My doctor ordered more tests, and this time the stress test had found that when my heart is under a lot of stress I have ton of blockage.  So they decided to sign me up to receive a defibrillator.  But after talking with the specialist for my defibrillator and telling her about some other symptoms I was having, she had mentioned it to my doctor and again more test were ordered.  It was determined that I needed to have open heart surgery to remove some of the muscle off the heart. I was devastated by the news and broke down.  I was completely scared out of my mind. This surgery wasn't rare, but it still one that is pretty risky. After a month of waiting for surgery day, I had said all my good-byes and see you on the other sides. The first surgery lasted for eight hours, followed by three hours for the defibrillator placement.  When I woke-up, I was in ICU and the doctor said everything went as according to plan. After spending just under a week in the hospital and being able to see and touch the Stanley Cup thanks to Coach Q and the Blackhawks, I was out and heading home.


The weeks that followed the surgery were not always easy. There were days were I felt as I could take on the world and then days were I felt as I was hit by a train. After a lot of prayer and advice I decided to go back to school, my doctor was very shocked that I "recovered" within three months of having the surgery, but the battle only was beginning. I had a rough start at school, but once I signed up for tutoring and got a new job at a local athletic club, I was able to drop 80 percent of my stress AND got myself in better health. By working at this health club for about four months I already had lost over 20 pounds and my blood pressure is better than ever.  My self-esteem is also better than it has been in years. People look at me and wouldn't even guess I had open-heart surgery because of how active I am active as well as the joy I have in my heart. And it is all because of one little angel, my doctor, telling me to get checked up and that checkup it ended up saving my life.

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Going Red for 10 Years with a Twist

Intro by Marc Watterson:


As many of you know, the American Heart Association|American Stroke Association is an active participant in the legislative process here in Utah. What you might not know is that we are also engaged with myriad of other activities created to help us achieve our goal of improving the cardiovascular health of all Americans. Over the next few months we will be highlighting some of the various programs the AHA|ASA runs to help us in our community outreach.


Our guest blogger this month is Cherie Reinertson, Director of our Go Red For Women program here in Utah! The focus of this group is to help the women in our lives recognize that 1 in 3 women in Utah die from cardiovascular disease and what they can do to prevent it!

This year marks a special year in Utah. On March 13th 2015 we will be celebrating our 10th annual Go Red For Women Luncheon. For the past 10 years we have come together to raise awareness for heart disease and money to support research, education and community programs. In 10 years we have managed to save more than 627,000 women’s lives, inspired nearly 90% of Go Red participants to make lifestyle changes, created more gender specific physician guidelines and much more.

To make this year even more unique and special we are adding a multicultural twist. This February we will be hosting our 1st annual Utah Por Tu Corazón Luncheon and Bilingual Conference. We will educate Hispanic women about the risk factors and symptoms of heart disease and empower them to make small but significant lifestyle changes in their own lives and in the lives of their families. This event will feature health screenings, Zumba, inspirational speakers and survivors from the Hispanic community and healthy cooking demonstrations.

We have such an exciting year coming up and we want YOU to join us! Save the following dates on your calendar and join us as we celebrate the energy, passion and power of women as we wipe out heart disease:
• Friday, February 6, 2015 – Heart on the Hill Day
  Join Go Red For Women and the Circle of Red at the Utah State Capitol in speaking to your local legislators about the AHA’s important advocacy measures.

• Friday, February 20, 2015 – Utah Por Tu Corazón Luncheon & Bilingual Conference – Frida Bistro
  Our first multicultural Luncheon that celebrates and educates Hispanic women.

• Friday, March 13, 2015 – 10th Annual Go Red For Women Luncheon – The Marriott at City Creek
  Celebrate 10 years of Going Red in Utah! Join us for a health and wellness expo, a surprise key note speaker and much more.


To learn more please visit www.utahgoredluncheon.org or contact Amelia O’Neill at Amelia.Oneill@heart.org

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We're Thankful... For You

It has been an incredibly exciting year in the Mid-Atlantic Affiliate, full of policy advancement and growth in our You’re the Cure network. None of our success could have happened without the work of you, our many dedicated advocates.

We are thankful for you.

Our DC advocates worked hard and accomplished two major policy wins so far this year: a tobacco funding policy that went into effect as of October 1, as well as a Worksite Wellness healthy vending and procurement policy win. These deserve major congratulations! As our year progresses, we know without a doubt we will be able to achieve even more success across our affiliate.

We are thankful for you.

Advocates and staff have been working together at Heart Walks across the affiliate to recruit new You’re the Cure members, and educate walkers on our policy issues for this year. Since July 1, we have seen our You’re the Cure network grow by over 5,000 new advocates who have been adding their voice to our campaigns to help us make even more progress this year. We would like to share a very large "thank you" with all of our advocates who joined us early in the morning to help us accomplish this growth!

We are thankful for you.

In August, we reached out to our advocates to participate in our August Recess activity and help deliver lunch bags with puzzle pieces to their federal legislators in support of the Healthy Hunger-Free Kids Act. This policy’s aim of protecting strong nutrition standards for school meals was just one of many opportunities for advocates to get to know their advocacy staff and other advocates, as well as their legislators, on a deeper level while completing offline actions – actions which have resulted in a direct, positive impact on their communities.

We are thankful for you.

Recently we were able to offer a virtual Volunteer Summit in AHA offices across the nation, which brought together high level volunteers, board members, and staff to discuss the new Community Plan 2.0. We had four volunteers attend. Tracey Perry shared her experience: "The Volunteer Summit was an excellent opportunity to review the Community Plan 2.0 and National Agenda of AHA. It was then very helpful to review our local Charlotte Market and see how our Health Assessment compared. We discussed ways to increase engagement of volunteers, increase prospects, and focus on the three top Health Priorities for 2015.

We are thankful for you.

Nothing causes our hearts to sing more than when an advocate has that feeling of making a true difference. Ginnie Gick summed up one of her experiences as an advocate. "Being able to participate in the Rally for Medical Research on Capitol Hill really brought home the importance of advocating for the funding that is so necessary to support the fight against heart disease and stroke. I met so many incredible people who are struggling with the challenge to live a normal life in spite of their risk or illness, and every one of us deserves the opportunity to ask for and receive the benefit of advancements in medicine."

We are thankful for you.

Over the next several months, our states will begin their new 2015 sessions and there will be a host of new opportunities to amplify your voice through advocacy. Without your passion and involvement, the American Heart Association would not be where we are in the Mid-Atlantic Affiliate, passing policy that keeps communities healthy.

Thanksgiving is why.

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You're Invited: Join Us to Learn More About Advocacy

We have a special opportunity from the NC Alliance for Health (NCAH), our statewide coalition advocating for obesity prevention and tobacco control policy change. The American Heart Association is a proud member of the NCAH.

NC Alliance for Health Healthy Food Access Training

You are invited to an interactive training on combating obesity and other chronic diseases by increasing access to healthy foods. There will be a discussion of food insecurity in North Carolina, and the many different ways people around the state are working to increase access to healthier foods.

You will how you can help make a difference. Attendees will have an opportunity to sharpen their advocacy skills, and learn tips to be more effective with media and decision-maker advocacy.

If you have questions or would like more information, please contact Sarah Jacobson at sarah@ncallianceforhealth.org.

Thursday, November 20, 2014
12:00 pm - 2:00 pm
Location: Forsyth County Health Department
799 N. Highland Avenue, Winston-Salem, NC 27101

Lunch will be served!

Register here by Thursday, November 6!

PS: Don't forget to post pictures of what you see in your food environment on your favorite social media with the hash tag #healthyonthegoNC!

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You're the Cure Advocates Come to DC!

Last month, eleven You’re the Cure advocates joined 300 volunteers from other participating organizations for the Rally for Medical Research Hill Day in Washington, DC. Their purpose in coming to Washington was to share their stories with Congress and to urge them to increase medical research funding for the National Institutes of Health (NIH).

    
There were 6 heart and stroke survivors, 4 caretakers and 1 researcher participating for the American Heart Association. They were able to share their personal experiences with their members of Congress in a powerful way, by sharing their stories. Check out this video, to learn more about these advocates and why they support increased medical research funding!

(Please visit the site to view this video)

They also shared messages from all of you! 1,500 You’re the Cure advocates shared why heart and stroke research is important to them. While in Washington, DC, our eleven advocates were able to deliver your message to Congress.

There are so many reasons to support heart and stroke research, yet Congress continues to fail to prioritize our nation’s investment in the NIH. If you haven’t already, encourage Congress to increase NIH funding in the 2015 budget! Medical research is an important issue for You're the Cure advocates, especially for those who shared their message with Congress last month. So help them and the many other who need the benefits that come from medical research by sharing your thoughts with Congress today!

           

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Medical Students Turned Advocates

Peter Evans, Christina Cahill and Lana Khuong know there is more than one way to save a life. They’ve organized CPR trainings, worked on tobacco cessation counseling protocols, coordinated cardiovascular research and fundraisers, and helped create healthy living lessons for adolescents.

They’re studying to become physicians at the University of Vermont’s Medical School, but they know that passing policy can also save lives. Lana said she was eager to become a part of a movement in which the government and civilians join to promote the well-being for all. So, all three have joined the American Heart Association’s Advocacy Committee.  

And we’re glad they did. Just recently, they talked about the dangers of sugary drinks and urged volunteers at the Vermont Heart Walk to sign petitions to Vermont legislators to pass legislation improving the availability and pricing of healthy food. They had a great time doing it and are eager to help us spread the word. Go team advocacy!

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Malenda McCalister, Kentucky

Malenda McCalister Kentucky

On September 18th, more than 300 advocates from over 100 organizations gathered on Capitol Hill to rally in support of ongoing funding for medical research, and You're the Cure advocate and heart disease survivor, Malenda McCalister, was excited to be among them.

In October 2008, at just 30-years-old, Malenda's life changed forever as she collapsed on the living room floor after giving birth to her son just 10 days earlier. She was rushed to the hospital cath lab where they  discovered she had suffered from a spontaneous coronary artery dissection (SCAD). She had a triple bypass and two stents placed, followed by 2 pacemaker/defibrillator surgeries and a lead revision surgery.

Today, Malenda (at right with singer/actress and congenital heart defect survivor, Laura Bell Bundy) is doing well, raising her two children alongside her husband, Jack, and speaking out wherever she can to raise awareness of SCAD and the need to listen to your body when you know something doesn't feel quite right. She was happy to share her story with her lawmakers on Capitol Hill to illustrate the need to adequately fund the type of research that ultimately saved her life.

Thank you Malenda, for taking time away from your family to share your story with lawmakers on Capitol Hill!

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What is Pediatric Cardiomyopathy?

Did you know that one in every 100,000 children in the U.S. under the age of 18 is diagnosed with a diseased state of the heart known as cardiomyopathy?  While it is a relatively rare condition in kids, it poses serious health risks, making early diagnosis important.  As the heart weakens due to abnormities of the muscle fibers, it loses the ability to pump blood effectively and heart failure or irregular heartbeats (arrhythmias or dysrhythmia) may occur.

That’s why we’re proud to team up with the Children’s Cardiomyopathy Foundation this month- Pediatric Cardiomyopathy Awareness Month- to make more parents aware of this condition (signs and symptoms) and to spread the word about the policy changes we can all support to protect our youngest hearts.
 
As a You’re the Cure advocate, you know how important medical research is to improving the prevention, diagnosis, and treatment of heart disease.  And pediatric cardiomyopathy is no exception.  However, a serious lack of research on this condition leaves many unanswered questions about its causes.  On behalf of all young pediatric cardiomyopathy patients, join us in calling on Congress to prioritize our nation’s investment in medical research.
  
Additionally, we must speak-up to better equip schools to respond quickly to medical emergencies, such as cardiac arrest caused by pediatric cardiomyopathy.  State laws, like the one passed in Massachusetts, require schools to develop emergency medical response plans that can include:

  • A method to establish a rapid communication system linking all parts of the school campus with Emergency Medical Services
  • Protocols for activating EMS and additional emergency personnel in the event of a medical emergency
  • A determination of EMS response time to any location on campus
  • A method for providing training in CPR and First Aid to teachers, athletic coaches, trainers and others – which may include High School students
  • A listing of the location of AEDs and the school personnel trained to use the AED

CPR high school graduation requirements are another important measure to ensure bystanders, particularly in the school setting, are prepared to respond to a cardiac emergency.  19 states have already passed these life-saving laws and we’re on a mission to ensure every student in every state graduates ‘CPR Smart’.
   
With increased awareness and research of pediatric cardiomyopathy and policy changes to ensure communities and schools are able to respond to cardiac emergencies, we can protect more young hearts.

Have you or a loved one been diagnosed with cardiomyopathy?  Join our new Support Network today to connect with others who share the heart condition.   

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FDA Announces Plan to Help Improve Health Equity for Women and Minorities

A new action plan released by the Food and Drug Administration (FDA) to increase the participation of women, minorities, and the elderly in research trials was welcomed today by four leading health organizations as taking an important step toward closing the health care disparities gap.  The groups called on the agency to implement the plan swiftly.

The American Heart Association, National Women’s Health Network, Society for Women’s Health Research, and WomenHeart: The National Coalition for Women with Heart Disease said the “FDA Action Plan to Enhance the Collection and Availability of Demographic Subgroup Data” will not only help boost representation of these population groups in clinical trials, but also will lead to more analyses on how medical drugs and devices affect women and men differently.

The groups particularly applaud the FDA for finalizing its guidance on the evaluation of sex-specific data in medical device studies and for establishing a steering committee and website to oversee and track progress on implementing the action plan. The groups, however, urged the FDA to do even more.  

The FDA’s Action Plan was required by the Food and Drug Administration Safety and Innovation Act (FDASIA), signed into law in July 2012.  The act directed the FDA to review medical product applications to determine the extent to which data on how new drugs and devices affect certain subpopulations is being collected, evaluated and released publicly. By taking the actions outlined in the plan, the FDA will emphasize the need to look for sex, race, ethnicity and age-based differences through medical research, allow subgroup-specific data to be more widely available for use in medical practice, and improve the participation of women and minorities in research trials.

“Guaranteeing greater diversity in research trials will help ensure that patients and their health care professionals have the most up-to-date information needed to make the best decisions about care and treatment,” said the four organizations. “By carrying out the actions recommended by the FDA plan, we can advance our nation’s efforts to achieve the high quality health care that women and minorities want and deserve.”

While the organizations applauded the FDA’s work to address the many issues they highlighted in testimony before the agency earlier this year, they called on the FDA to:

  • Establish and clearly spell out for application sponsors the consequences of not collecting or analyzing subgroup data;
  • Take action to address concerns related to the under-inclusion of women, minorities and the elderly in early phase trials; and
  • More aggressively move forward with additional, standardized subgroup information in the labeling of medical products.

“Gender, race and age play a decisive role in how heart disease, stroke and other forms of cardiovascular disease affect us. Yet, these key populations are often left out of the research necessary to better understand the diverse impact of these diseases,” said Nancy Brown, CEO of the American Heart Association. “That’s why the FDA must not allow this new plan to just gather dust on a shelf. It’s critical that these actions be carried out rapidly and aggressively, and we look forward to working with the FDA to implement this plan.” 

“Women and their health care providers need complete and accurate information about the medical products available to them, particularly the specific benefits a drug or device might offer and the risks it might pose to her because she is a woman,” said Cynthia Pearson, executive director of the National Women’s Health Network. “The current lack of information exposes women to harm that could be avoided by more inclusive requirements for clinical trials. While the FDA Action Plan is a step in the right direction, the agency must do more than remind and encourage industry to include women and minorities in trials and analyze the data. The FDA must require that companies do this to ensure that that the products women use are safe and effective for them.”

“The Society for Women’s Health Research is pleased that the FDA heard our call for the need to release demographic data and establish training for all reviewers to look for sex differences. One of SWHR’s key priorities for more than 20 years has been making sure this data is appropriately analyzed and reported by the FDA,” said Phyllis Greenberger, president and CEO of the Society for Women’s Health Research.  “Still, the Action Plan falls short in several important areas. The FDA should do more to prioritize finding out how medical products affect women and men differently and report that information to patients and health care providers, especially since there have been significant discoveries of sex differences from biomedical research in the last two decades.”

“Women and their health care providers are tired of waiting for access to data demonstrating whether drugs and devices are safe and effective for their use. The FDA has studied this problem for decades, yet
the problem has not been fixed,” said Lisa M. Tate, CEO of WomenHeart: The National Coalition for Women with Heart Disease. “Implementation and enforcement of these recommendations would go a long way toward assuring that providers can recommend appropriate treatments for 51 percent of the U.S. population, including the 43 million women living with or at risk for heart disease.”

In the coming months, the organizations will submit additional comments and recommendations about the FDA Action Plan and work with the agency and Congress to address continuing areas of concern vital
to the health of women, minorities and older Americans.

Read what FDA Commissioner Margaret Hamburg had to say about this important step.

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Research & Advocacy = Results

In the last decade, U.S. hospitalization and death rates for heart disease and stroke have dropped significantly!  That means our research and your advocacy are paying off!  Let's keep it going to reach the American Heart Association’s 2020 goal — to improve the heart health of all Americans by 20 percent while reducing deaths from cardiovascular diseases and stroke by 20 percent by 2020.  Learn more here:

http://blog.heart.org/study-finds-significant-drop-in-hospitalizations-deaths-from-heart-disease-stroke/

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