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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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My Story: Katie Krisko-Hagel

Katie Krisko-Hagel Eagan, MN

I am a registered nurse.  My Ph.D. is in nursing with a specific focus on heart disease, especially in women. My stroke story is about my mother who died from stroke and heart disease six years ago.

 
It was 1995 when she presented to an emergency room after having experienced dizziness, weakness, and loss of consciousness. She had a known history of high blood pressure yet she was admitted for an inner ear disorder. I was told later by the nurse that she was alert and oriented as evidenced by her ability to answer questions about where she lived, living relatives (who, in fact, were no longer alive), etc. Yet, nobody bothered to check to see if her answers were correct; because they weren't. My mother's memory was quite impaired and by this time, the window of opportunity had passed and brain damage had occurred. Her life was never the same since then. She lost her ability to live independently (she was only in her mid-seventies at the time) and eventually needed to live out her final years in a nursing home as she continued to suffer more strokes. Since 1995, much has improved about how people are assessed in an emergency room and treated by receiving tPA once ischemic stroke has been identified. Many brains have been saved; many lives have been uninterrupted and spared. Also, since 1995, a lot has been done about the prevention of stroke. This has all come about because of research. But, the battle isn't over because many people still suffer and die from stroke and heart disease every year. In fact, heart disease is still the number one killer of men and women in the United States. Research needs to continue in order to change these statistics. Without research, many lives like my mother’s will continue to be cut short or so drastically altered that they will never be the same again. Prevention and adequate treatment is key and can mean the difference between life (as well as quality of life) and death. Only through research can we have any hope to change the statistics. Only by continuing to fund that research, we can make it happen.

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J. Antonio G Lopez, MD FAHA

J. Antonio G. Lopez, MD FAHA

The American Heart Association (AHA) has supported and played a pivotal role throughout my career in cardiovascular research, leading to my focus on the prevention and treatment of cardiovascular disease. Presently, I am the Director of Preventive Cardiology, the Lipid clinic, and LDL apheresis Program, and Hypertension Consultation Service at the Saint Alphonsus Regional Medical Center in Boise Idaho. Without the support for cardiovascular research, the understanding of disease processes that lead to important scientific advances would not be possible. Our current knowledge of risk factors (high cholesterol, low good cholesterol (HDL), diabetes, smoking, high blood pressure and family history of premature heart disease) leading to the development of atherosclerosis and coronary artery disease was based on epidemiologic research.  Advocacy is fundamental to continue our progress.

I support advocacy on behalf of the American Heart Association chiefly for the health of our communities. For example, the AHA supports coverage of preventive benefits in private and public health insurance plans and the implementation of policies that provide adequate resources and encourage healthy choices. Locally, the AHA as a member of the Smokefree Idaho coalition is working to make communities across our state smoke free, inspiring more Americans to live in an environment that supports a heart-healthy lifestyle. Moreover, through our education efforts the AHA is reaching at-risk populations with cause initiatives and online tools. Thus, strong advocacy, sustained efforts, and programs such as “You’re The Cure” will significantly impact the reduction of cardiovascular disease.

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Tell Congress WHY you support medical research

We don’t have to think twice about why we support more funding for organizations like the National Institutes of Health (NIH) to research cures for cardiovascular disease and stroke. But unfortunately the funding cuts continue.

We routinely tell Congress that NIH research leads to innovation, jobs, and life-saving medical breakthroughs. But right now they need to hear the personal reasons why research is important from advocates like you!

Tell us, WHY do you support medical research?

For me, I support the NIH because of advocates like Ryley. In 2013, Ryley, just a teenager, unexpectedly suffered from multiple strokes that affected five different areas of his brain. Since then, he has had to endure thousands of hours of physical therapy and testing to relearn to walk, talk, and function like his normal self. But despite the large obstacles he has faced, he has had the opportunity to share his story and help others like him.

Ryley has made tremendous progress in the face of such large obstacles, but doctors still have much to learn about his condition. With more available funding, NIH has the opportunity to find real cures for cardiovascular diseases, giving hope to families like Ryley’s who depend on research to provide clarity and answers.

For me, individuals like Ryley are why.

What about you? Tell Congress today why you support medical research!

Finding a cure doesn’t happen overnight; however, each step takes countless hours of research and manpower, trial and error, and hope and frustration. But each step is an opportunity to bring a new chance at life to families across the country. It’s why the work NIH does is so vital, and it’s why the work we do to protect NIH’s funding is so critical.

Ryley is why. A cure is why. Life is why. Show your support for NIH and tell us: what’s your why?

 

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Our new anthem: life is why

School behavioral specialist Carla Leonard had her hand on her heart during the Pledge of Allegiance when a heart attack nearly killed her. Her doctor didn’t mince words with her family afterward: “If I didn’t have surgery, they should pick out a dress for my funeral,” she said. “Plain and simple.”

But Leonard wanted to live — to see her daughter graduate from high school — so after surgery she started on a new path that continues today. She kicked her soda habit, started visiting her doctor regularly and got healthy enough to experience many important milestones in her life.

Leonard exemplifies the American Heart Association/American Stroke Association’s new brand tagline, “Life Is Why.” The phrase, which began appearing with the logo on Heart.org on Aug. 1, is much more than a slogan. It’s the singular idea that stands behind all the lifesaving work the AHA has carried out for 90  years – and it’s the very basic idea that people should be healthier so they can enjoy their lives more.

“The work we do matters,” American Heart Association CEO Nancy Brown said. “It has mattered to my family and I’m sure it has mattered to your family. Life is why.”

(Please visit the site to view this video)

Brown’s grandfather had a blockage of his carotid artery in the early 1970s. During surgery, he suffered a stroke, and his life was never the same — nor was his family’s. He died a few years later after another stroke. “I missed my grandfather then and I continue to miss him today,” Brown said.

But she pointed out that scientific research and treatment guidelines have led to much better outcomes for many others in the decades that followed. One of those survivors is Brown’s sister, who is thriving despite two recent strokes. She received treatment at one of the AHA’s primary stroke centers, helping her working through rehabilitation and regain her life.

“My sister is why, my grandfather is why — and all of you are why,” Brown told the organization’s volunteers and staff when announcing the adaptation of “Life Is Why” as a focal point of the AHA’s brand.

The American Heart Association is the nation’s oldest and largest voluntary health organization dedicated to fighting heart disease and stroke — the two leading causes of death in the world. The AHA fights these diseases through a wide variety of tactics, yet “Life Is Why” can be attached to every facet of the organization’s work.

Life is why the AHA helps people eat healthier foods and get more active — among the many activities the organization has to help people live healthier lives.

Life is why Roni Noone decided to lose weight so she could enjoy her life with her family.

Noone, a 38-year-old Baltimore mom who struggled with her weight in her teens and 20s, has lost a total of 70 pounds because she wants to be there for those special moments with her family. She has joined a gym and even run a marathon – saying she didn’t want to set a poor health example for her sons Ryan, 9, and Evan, 3.

Roni Noone is motivated by the special moments with her family.

“Last year I took Ryan whitewater rafting, and it was really emotional for me. Now I’m doing all the things I got healthy for,” said Noone, a fitness blogger who’s also writing a book. “I want to run a half-marathon with him when he’s 18. And I want to be able to do all these things that I’m doing in my 30s when I’m in my 50s.”

Life is why the American Heart Association has funded more than $3.6 billion in heart disease and stroke research, more than any other organization outside the federal government. Life is why the association works to develop treatment guidelines that help healthcare providers follow scientifically proven treatment standards.

Life is why the AHA is the nation’s leader in CPR training and science, and why the AHA has helped pass many laws and policies that have improved the public health. In fact, now that 17 states have passed laws requiring CPR as a high school graduation requirement, more than 1 million seniors will leave school every year with this lifesaving skill.

Leonard, 52, has gone on to be an AHA advocate for CPR in schools and screenings to detect heart defects in newborns. And she did get to see her daughter Yasmine finish high school, just one of many milestones she has experienced since her surgery eight years ago.

“The highlight of them all was when I heard that my child had used my life-and-death experience to write her entrance essay for college,” she said. “I want to be able to look back on my life and say that I did not waste the second chance I was given.”

And as 13-year-old Natalia Bascunan of Nutley, New Jersey, will attest, loved ones and special moments are the most important illustration of Life Is Why. Natalia made the Little League all-star team years after facing two open-heart surgeries for a heart defect.

“They loved it because she was the only girl in the state on an all-boys team,” said Natalia’s mom, Roe Corsi. “When they found out she had a heart condition, they loved her even more.”

Another person who has embraced life’s special moments thanks to better health is Bernie Dennis, a longtime volunteer with the AHA who is now the chairman of the board.

Dennis said he didn’t appreciate the risks he was taking with his health until he had three heart attacks in one month, followed by a quadruple bypass. While he recovered, he started realizing some of the things he’d taken for granted.

“I can remember the fact that I was sitting on my porch saying to myself, ‘this is the first time in my life I’ve appreciated the warmth of the sun in May,’” he said.

Getting healthier has meant Dennis has gone on to experience precious family time that he would’ve missed. A high school graduation. A wedding. Playing with his “two beautiful granddaughters.” And dressing up as Santa Claus at Christmas.

“There’s a choice you get to make about living or not living,” he said. “My wife’s hand gave me reason to live. My wonderful family gave me reason to live.”

Learn more at www.lifeiswhy.org 

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