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Heart of Gold

I am excited to be able to celebrate some amazing advocates from Central MA as Heart of Gold Winners at the Heart of the Commonwealth Event.

The Heart of Gold Award is presented each year to members of the Central Massachusetts’ community who have enhanced the quality of life in the region and who have played a significant role in advancing the mission of the American Heart Association

John and Luann Ellsessar, Sutton; Ben and Dawn Symes, Millville and Gracie Soultanian, Shirley-Heart of Gold for advocating to ensure that our schools and communities are equipped with AEDs and that our students are trained with the lifesaving skill of CPR in memory of Michael Ellsessar, in honor in Tyler Symes and in recognition of 13 year old Gracie’s inspirational efforts.

Rachel Henry, Worcester-Heart of Gold for advocating to ensure that all stroke patients receive quick, high quality care like she did; and that all residents of the Commonwealth know the signs and symptoms of stroke so they can have the opportunity to not only survive but thrive following a stroke like she has.

 Patricia Degon, Worcester-Heart of Gold for advocating to ensure that our children will get quality daily physical education in schools to create the foundation of lifelong physical fitness.

The Heart of the Commonwealth Celebration & Wine Tasting, which will attract more than 250 of Central Massachusetts’ most prominent business and healthcare professionals, is the annual social event benefiting the American Heart Association and American Stroke Association in its mission to build healthier lives, free of cardiovascular diseases and stroke. We can be proud that over $31 million of American Heart Association funded lifesaving research takes place right here in Massachusetts. The evening will include a cocktail reception followed by wine and microbrew tasting, silent auction and live music performed by Rusty Scott Jazz Trio. For more information and to purchase event tickets, please visit http://heartofthecommonwealth.heart.org

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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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Kudos to Albany County!

Albany County Legislators just passed a ban on the sale of tobacco in pharmacies...Yup, many pharmacies still sell tobacco!  You wouldn't see tobacco sold at the doctor's office and you shouldn't see them when filling up your prescription.   If signed by County Executive McCoy, it will be the first law of its kind in New York!  Way to go Albany County!!

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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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We've Come So Far, North Carolina!

On August 7th, Governor McCrory signed the state budget. This year's short session has been a lively one with some surprises including that the Legislature still has not concluded session and that we expect the Legislature will return for work this November on Medicaid Reform. As always, we will monitor all the legislative activities and keep you informed. During the active session, we made strides toward our policy issues and we are making plans to build strong support for our legislative issues in 2015. Thank you for your advocacy this year!

Healthy Food Financing/Food Deserts
This year, we have been working to educate lawmakers about the importance of improving access to healthy foods and eliminating food deserts in our state. While we weren't successful in securing funding for improving healthy food access through a healthy corner store or healthy food financing initiative, we did educate many lawmakers. Our work must continue and we need your help, and your voice, to continue the conversation with your elected officials this summer to remind them how important this issue is to the state of North Carolina. Email your lawmakers today and let them know you support funding healthy corner store and healthy food financing initiatives for our neighbors across the state.

Stroke Advisory Council (SAC)
We supported a $50,000 funding request for the Stroke Advisory Council as recommended by the Justus-Warren Heart Disease and Stroke Prevention (JWHDSP) Task Force. Unfortunately, we were not successful in securing this funding. We did successfully work in collaboration with the JWHDSP Task Force to engage the General Assembly and the Governor in Hypertension Awareness Day on May 21st.

Tobacco Prevention Funding
In 2014, we sought $1,000,000 in recurring funding for tobacco use prevention programs, as well as a separate $200,000 in funding for the You Quit, Two Quit program to help pregnant women quit smoking. With money tight, we were not successful in increasing funding for tobacco control. Lawmakers worked hard to secure the You Quit, Two Quit funding, but efforts were not successful. Instead, they added You Quit, Two Quit to the list of programs that can compete competitively for grant funding.

Our work must continue if we are to improve the lives of our neighbors, our children, and ourselves. Thank you for using your voice. Together we will build healthier lives, free of cardiovascular diseases and stroke. Life is why.

Click here to urge your lawmakers to eliminate North Carolina's food deserts in 2015.

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Join Us at the 1st Annual Treasure Valley Saving Strokes Event

Are you a stroke survivor or a caregiver to a stroke survivor? If so we would like to invite you to join us at our 1st Annual Treasure Valley Saving Strokes event!

The Saving Strokes program began in 2001 with 26 participants.  The vision was to offer stroke survivors an opportunity to participate in golf for pleasure as well as for physical rehabilitation.  Ten years later, this small program has grown to 16 sites and serves over 1,000 participants annually.

 

Join us on Tuesday August 19th at the Banbury Golf Club from 8:30 am to noon.

Participants in this great event will enjoy:

  • A  60 minute group lesson with a golf pro
  • An opportunity to participate in chipping, putting, and full swing practice
  • Adaptive golf instruction is available for individuals who need assistance
  • with balance or require the ability to “sit” while still being able to play golf
  • Free Breakfast
  • Caregiver Pampering and Education

Participation is limited to 25 stroke survivors and their caregivers so if you are interested RSVP today!

For more information contact Adrean Cavener at 208-406-9188 or adrean.cavener@heart.org or Malinda Cantrell at 208-501-7795 or malinda.cantrell@heart.org

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Mary Kay Ballasiotes

Mary Kay Ballasiotes, Mid-Atlantic Affiliate

Mary Kay Ballasiotes has been advocating for children for over 15 years.  Her daughter, Michelle had a stroke before she was born and that moment changed both of their lives forever. Mary Kay’s advocacy days started in 2002 in Chicago where she founded the Childhood Stroke & Hemiplegia Connections of Illinois, simply because there was a need for it.  Before long, Mary Kay and her daughter were fixtures at Lobby Day.  At National Lobby Day, May 2006, Mary Kay spoke with the Vice President of the American Stroke Association (ASA) and told him about her daughter having a stroke before birth.  She learned that the VP had never heard of pediatric stroke. From that day on Mary Kay made it her mission to collaborate with the American Heart Association (AHA) and the ASA about pediatric stroke, and to raise awareness about it.

Over the years, Mary Kay and Michelle attended heart walks, lobby days, and were very vocal about pediatric stroke in each state they have lived in: Illinois, Georgia, and now North Carolina. Most recently, Mary Kay co-produced a pediatric stroke awareness video with the American Heart Association/American Stroke Association.  The video was created to raise awareness that strokes can happen in babies, children and even before birth. Join us here  to watch this impactful video.   

Making a difference in people’s lives is the most rewarding element of being part of advocacy.  Mary Kay and Michelle have attended many lobby days over the years, both national and state.  The experience never gets old to Mary Kay.  She loves seeing how her passion and effort can make a difference, and strongly feels that one person can make a difference!  In August 2010, Mary Kay and her family moved to North Carolina where she soon started working with Betsy Vetter, the AHA Director of Government Relations in the Mid-Atlantic Affiliate.  Mary Kay readily admits her love of working with Betsy.  She is one of the reasons Mary Kay is still volunteering and advocating with AHA.  Mary Kay feeds off Betsy’s passion and enthusiasm and feels that Betsy has a gift for working with volunteers and government officials.

Mary Kay is very proud of her daughter Michelle and the hard work that she has been doing right alongside her mother. While back in Chicago in 2007, Michelle was chosen to be one of the 12 “Faces of Cardiovascular Disease.”  Her image was captured on one of many large posters that were circulated around the United States for Heart Walks.  These posters are still being used today.  Because of Mary Kay and Michelle’s hard work, they were both featured in an ABC news article once again shedding light on pediatric stroke. In 2009, Michelle was honored with the Stroke Hero of the Year and received the National Youth Advocate of the Year award.

Mary Kay’s calling is to advocate for children. She feels that things happen for a reason. The stroke that Michelle suffered enabled both Michelle and Mary Kay to reach other families and make a difference in their lives and in the area of pediatric stroke.  Mary Kay does not have much free time, but when she does, she enjoys going out to lunch with friends and reading. 

One great memory Mary Kay has included that of her son, Alex.  While driving back from picking Alex up at college, he remarked how much he admires the work that she has done over the years.  The example that Mary Kay has provided has empowered him to pay it forward by getting involved in politics and leadership roles.   May Kay continues to advocate for children and wants everyone to know that one person can make a difference.

 

 

 Advocate interview provided by Blog Contributor Amanda Orfitelli.

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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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My Story

My name is Ryley Williams.  I am a high school student and stroke survivor.  This is my story. 

On July 8, 2013 my life was forever changed when I collapsed during warm up exercises at sophomore football practice. I was rushed to the ER, and they quickly told my parents that I needed a higher level of care, so I was taken in a helicopter to Arkansas Children's Hospital in Little Rock. In less than 4 hours of being admitted my parents were told that I had suffered multiple strokes in the left side of my brain. I could not speak or move the right side of my body. But they still did not know what caused the strokes. I was 15 years old, and in the best shape of my life. How could this happen to me?! 

Less than 48 hours later I was taken into emergency surgery to remove a portion of my skull to relieve the terrible swelling from the strokes. I am told this saved my life. Immediately following the crainectomy, a transesophageal echocardiogram was performed and it was then that the vegetation like strands that had built up from an unknown (and never identified) bacterial infection were found, and I was officially diagnosed with negative culture endocarditis.

I was immediately started on several different strong antibiotics to fight the infection, so the next 6 weeks I had to carry around an IV for these medications.  I am told that I completely broke all expectations and predictions from the stroke damage and was moved out of PICU directly into the rehabilitation unit at Arkansas Children's Hospital. 

I was still getting my food through a feeding tube in my nose, and couldn’t sit up or move on my own. There was speculation that I might only get part of my right side working again. 

But gradually and in leaps, I started fighting to get my life back, beginning with talking, swallowing, moving my arm and leg, and eventually sitting up and standing. After almost 3 weeks in rehab, I took my first steps with the help of a walking machine, and several physical therapists. The next move was a transfer to a residential rehabilitation hospital closer to home, and I immediately started physical, occupational and speech therapy on a daily routine. After another 3 weeks, I was able to come home.

Altogether the total amount of time spent in the hospitals was 7.5 weeks. It was during this time that my neurosurgeon broke it to me that I would never play football again, or any other contact sport. This was devastating to me. In November of 2013, I went back to ACH for my final surgery that replaced the missing piece of skull with a prosthetic piece.

Once again I fought against the odds, and went home after only 2 days, and never lost any of my progress. In January, I went back to school with a shortened schedule, and daily PT/OT/Speech therapies, as well as trying out my new role as a student athletic trainer.

It has been a year since my stroke, and it’s been a very tough journey, not just physically, but mentally hard to accept my new limitations and lifestyle. I want to tell other stroke survivors to not give up, even a tiny progress is progress, and it’s further than you were a week ago.

A lot of people think I have it easy, but it’s really hard to see all my friends moving on in their lives, and I am just fighting to run again, or ride a bike, or play video games. It will all happen again…..just not as quickly as I wish, and that is okay. I have also had my 16th birthday since the strokes, but I will not be able to drive for another year or so, because I have had seizures that are “normal”, but should be controlled by medications I take daily. No matter what, I am alive and I am thankful that I am still on the earth to help others that have been through what I have been through.

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2 Days Left and So Much to Do!

With only two days left before the legislators break for the summer we need a last push to get some critical legislations to help our kids passed. The House still needs to take action on legislation that would require all coaches to know CPR, restricting the sale and use of E-Cigarettes, and requiring healthy vending in State Buildings and the Senate has a chance to pass legislation that would provide quality physical education in our schools. We also have a chance to get some language in around setting up a stroke system of care and we are waiting for final approval on fresh food financing.

Your legislators are hearing from all advocates in these last few days, it is crucial that your voices is being heard too so if you have not already taken action please do so today! Send an email or call your legislators today and let them know that these issues are important to you! I  appreciate your help and your continued advocacy we only have a few days to pass some important legislative priorities, and I hope to be passing along some good news on Friday!

 

  

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