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Take the You're the Cure Advocate Survey

2015 was a great year for You're the Cure advocates and the many policy efforts that you work on. We have big plans for 2016, and we want to hear from you and what you want to see in the future for You're the Cure.

So take the survey now and let your voice be heard.

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Update on Christian Lybbert

Aimee Lybbert, Mother of CHD (Congenital Heart Defect) Survivor, Christian, updates us on his life now and what she sees every day as a “Heart Mom”

You can catch up on Christian’s story from nearly two years ago here.

Christian will be three at the end of next month. He's been through two more open heart surgeries and four open abdomen surgeries and one surgery through his ribs on his diaphragm. He's now living at Seattle Children's and is currently on the waiting list for a heart transplant.

He has quite the collection of scars. We as his parents do too.

We have been at Seattle Children's for almost 5 months now with most of our time spent in the Cardiac Intensive Care Unit (CICU).

We have seen our share of families and children go through the CICU.

I've seen parents waiting anxiously for their surgery pagers as they wait for any update, I've seen parents hugging surgeons. I've seen rooms that have one little body in the room surrounded by scores of machines and staff working together to get the child through it all. I've seen parents cry with joy as their child had the breathing tube removed and they start to talk again. I've walked past rooms where moms are holding their children for the first time in forever as the nurse takes pictures. I've watched as they get transferred to the recovery floor, and I've watched parents take video of their toddler as he walked out the front door of the hospital after he conquered heart surgery. I've seen such joy at the many triumphs and miracles that happen here. 

I've also seen complete and utter despair. Sometimes things don't go as anticipated or as hoped.

Christian was like that. He had several emergency surgeries and he once bled out from a Gastrointestinal bleed and he had to be intubated and scoped while they transfused almost the entire volume of his blood. There were days that I didn't know how I could go on.

When my son headed off to one of his emergency surgeries I was a complete mess and was sobbing in the elevator on my way to the cafeteria. Another heart mom saw me. She asked me my son's name and told me that she saw me crying and couldn't leave me alone like that. She gave me a hug and said she'd pray for me.

She got off on her floor and I kept traveling down. The next day a card arrived with a note and a Starbucks gift card from her.

She had her own troubles and she took the time to look out for another person in need.

There are a surprising amount of kids and parents whose journey includes a hospitalization and or surgery in order to keep their CHD in check. Congenital Heart Defects are the most common birth defect. Approximately 25% of kids with a CHD will require a surgery or other intervention to survive. If you're on the outside looking in the most important thing to do is just to listen and quietly let them know you love them. If you're on the inside of the CHD storm it is important to realize that you're not alone.

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Heart Month in Montana - Are we doing enough for our littlest hearts?

Guest Blogger: Amanda Cahill, Montana Government Relations Director

February is Heart Month which has me thinking about the health of Montana kids’ hearts.  One way to help children stay healthy is through the Physical Education (PE) classes taught in schools.  Did you know that there’s no requirement for elementary schools to have any minimum amount of PE time?  That means some kids in MT are only getting 30 minutes of PE per week.  This number is too low for many reasons. 

Physical activity is essential for children, and PE offers a structured way to teach them how to be active.  Studies show that school-based physical activity correlates with improved academic performance and leads to overall healthier children with lower risks of heart disease, diabetes, and obesity.  Additionally, increased activity leads to better academic performance. 

When children sit too long, their brains simply aren’t getting enough oxygen to stay active and enable them to learn.  According to the Society of Behavioral Medicine, “exercise increases the levels of neurotransmitters associated with increased mood and decreased stress, along with improving the neuroplasticity (the ability to learn) of brain cells.”  Montana children deserve a better chance at staying healthy, active, and increasing their ability to learn. 

What can we do about it?  Professional health organizations, including the AHA, advocate for at least 60 minutes of physical activity per day.  In order to help children achieve that level, it would be ideal for schools to offer at least 150 minutes of Physical Education per week. 

You can get involved in several ways; encouraging your local school boards to enact a policy to ensure 150 minutes of PE in elementary schools per week, talking to principals about gradually increasing the number of PE minutes in schools near you, or writing to the Board of Public Education and asking them to make this a state-wide requirement.  The AHA, along with SHAPE Montana (The Society of Health and Physical Educators), have been working on this issue by asking health leaders around Montana to write letters of support with the intent of taking the request to the Board of Public Education and the Office of Public Instruction.  If you’d like to get involved please email Amanda Cahill; amanda.cahill@heart.org.

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Join Us in Missoula on February 19th

On February 19th, 2016, American Heart Association of Missoula is hosting the Annual Go Red For Women Luncheon. The Luncheon is designed dispel myths and raise awareness of heart disease as the number one killer of women. The Luncheon will focus on educating, honoring survivors, and inspiring lifestyle changes.

February’s event, to be held at the DoubleTree by Hilton, will feature a program highlighting local survivors who will share their experiences to break the stereotypes around heart disease.  Keynote speaker Joey Traywick, R.N., will motivate, educate and provide tools to help guests take control over their health no matter how busy their lives.

The American Heart Association is determined to break gender inequality in heart related research. Funding from Go Red For Women Missoula will help increase gender-specific research which will help close the gap in information physicians need to treat women. Currently, only 24% of participants in heart-related research are women.

We are hard at work across the state of Montana with a focus on identify gaps that lead to slower and less effective cardiac patient care. A generous grant from the Helmsley Charitable Trust, Mission: Lifeline is helping healthcare providers to close those gaps through changes in protocols.

Maureen Buke will share her story of survival. Maureen suffered from a STEMI heart attack in Stevensville, MT days before the local emergency service was granted a 12-lead. While Maureen did not benefit from the life-saving equipment, she is thankful for the program that now covers 98% of the state:

“My community now has one. I am so thrilled as now many lives will be saved through this generous gift. If the ambulance would have had one last year when I started having problems, I probably would not have had a heart attack and my story would be much different.” 

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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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Youth and e-cigarette exposure

About 18 million U.S. middle and high school students – 70 percent – are exposed to e-cigarette (also known as e-cigs) advertising online, in stores, newspapers, magazines and movies, and on television, according to a report released by the U.S. Centers for Disease Control and Prevention.

E-cigarettes deliver a nicotine-containing aerosol popularly called vapor by heating a solution usually made of glycerin, nicotine and flavoring agents. An American Heart Association policy statement said that e-cigarettes target young people and can hook people on nicotine and threaten to “re-normalize” tobacco use.

In a recent statement, AHA CEO Nancy Brown said:  “The tried-and-true methods to attract a new generation to tobacco must be reined in,” “Otherwise, more and more young Americans will put themselves at risk for heart disease, stroke or even an early death as a result of taking up tobacco in any form.”

The e-cig ads are following a familiar tobacco marketing playbook of old with themes of independence and rebellion that are aimed specifically to addict the next generation.  E-cig advertising to young people “is like the old time Wild West,” said CDC Director Tom Frieden in a media briefing. With no regulations and growing ad budgets, spending nearly tripled in one year from $6.4 million in 2011 to $18.3 million in 2012, according to a study in the American Journal of Preventive Medicine.

The CDC said that manufacturers of e-cigarettes also target youth through advertising on social networks. Online ordering makes it easier for kids to purchase e-cigs and related products.

In 2014, e-cigs became the most common tobacco product used by middle and high school students. The most recent CDC data shows that from 2011-2014 e-cig use by high school students increased from 1.5 percent to 13.4 percent. Among middle school students it rose from 0.6 percent to 3.9 percent. This sudden and dramatic rise in youth use sadly illustrates the effectiveness of unregulated advertising for these products. 

For the full story, please visit here.

We are working to raise awareness on the issue at the local, state and federal levels on this growing public health issue.  If you want to get involved locally, please contact Josh Brown for more information.

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What is Happening in Montana

Guest Blogger: Amanda Cahill, Montana Government Relations Director

It may not be a legislative year for Montana, but that doesn’t mean a break for our important advocacy work.  As we roll into 2016 our AHA staff and volunteers will be working on two important issues; CPR education and Physical Education minutes. 

CPR Education

Did you know 70% of Montanans DO NOT KNOW CPR?  Most often, the need for CPR arises at home, by learning CPR the life you are most likely to save is a loved one. We are launching a grassroots effort across the state to ensure that kids are taught CPR in school.  By providing a fun, interactive 22 minute lesson on Hands Only CPR our Montana students can become life savers.  Over the next year we will be reaching out to school boards, superintendents, teachers, and the state Board of Public Education to ask them to consider making CPR education a part of school curriculum.   

Physical Education

There is currently no minimum number of PE minutes in Montana elementary schools.  The mandatory minimum for middle schools is 225 minutes per week.  There have been numerous studies in the past 15 years showing a positive correlation between amount of physical education and better school outcomes.  Everything from attendance, behavior, test scores, and overall grades are improved when children get adequate physical activity. 

We recognize that there are logistical difficulties, especially in small schools, for making sure students get enough PE, however we maintain that it’s worth the effort.  With obesity and childhood diseases abounding in the US, this is one small step we can take to stave off these issues in Montana.  We are teaming up with SHAPE (Society of Health and Physical Educators) to reach out to the state Board of Education and individual districts to institute a mandatory minimum of 150 minutes of PE in elementary schools. 

If you’d like to help in either of these efforts, please reach out to me at; amanda.cahill@heart.org.

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Eric Price - advocate highlight

Eric Price’s instinct for CPR response kicked in when Skyler Nelson collapsed of cardiac arrest at West Jordan Middle School on Oct. 14. Price is vice principal at the school in West Jordan, UT, and had completed a CPR refresher course just a few days before the 14-year-old went down while jogging with PE classmates around the gym.

KUTV in Salt Lake City featured the story, including gym surveillance video, which shows how officials at the school responded immediately. They called 911. Special Education Teacher Lucia Evans tried to find Skylar’s pulse and Price began CPR compressions. School Resource Officer David Hood assisted with compressions until Skyler’s heart began beating on its own.

The American Heart Association recently honored their teamwork with our HeartSaver Hero Award. Skyler was also on hand to help present the award and, although he doesn’t recall much of the event, he is grateful to his lifesaving team. "I'm feeling fine. I'd just like to thank all the people who supported me through this," he said. Doctors have determined that Skyler was born with a genetic heart defect that had gone undetected and he underwent surgery to have a defibrillator implanted in his chest to prevent future problems.

The lifesaving incident has led to CPR training at the school. Jordan Valley Medical Center and its owner IASIS Healthcare purchased CPR in Schools kits in the past and will use these to train eighth-grade students during their health class on Dec. 8.

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We're Feeling Grateful

As AHA Advocacy staff, we get to work alongside the most remarkable volunteers- like YOU! We get to see lives improved and lives saved as a result of the work we’ve done together, and for that, we're grateful.

As You’re the Cure volunteers, you share personal stories of loved ones lost too soon, of survival, or of triumph over heart disease or stroke- all because you know your stories will make a difference in someone else’s life. It is often those stories that convince lawmakers to pass the policies making our communities healthier.

Because of you, more babies are being screened with Pulse Ox and having their heart defects corrected before it’s too late. Because of you, people in communities around the country have been saved by students who learned CPR in school. Because of you, people are getting better stroke care, families have safe places for active play, fewer people are smoking, and kids are eating healthier food at school.  The impact you’re making is incredible, and our communities are better places- because of you.

You make us cry. You share your joy. You inspire us. You amaze us. And we’re just so grateful for all you do.

We’re including YOU as we count our blessings this month, and we wish you a wonderful Thanksgiving with family and friends!   

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Mission:Lifeline Helping all Montanans

The Mission:Lifeline program has been at work for a little over a year in Montana working to improve the outcome of cardiac arrest patients in rural parts of the state.  The program has given out over a million dollars to hospitals and emergency service providers in rural areas to purchase expensive but lifesaving equipment that rural providers can not otherwise afford.

As the program enters its second year they are starting the next phase of outreach to improve cardiac arrest outcomes. Program directors have reached out to the Native American Communities in Montana in order to help improve the outcome of cardiac arrest patients in the Native American communities.

EMS services on all six of Montana’s reservations, plus a tribe with 4,500 Native Americans, have received equipment allocations through a $4.6 million donation by the Leona M. and Harry B. Helmsley Charitable Trust.

“Native American risk factors for heart disease are twice as high as anyone else’s because of their body makeup and ethnicities,” said Lacey Gallagher, the spirit of women coordinator for Benefis Health System in Great Falls.

There are about 42,000 people living on reservations and roughly double that number of Native Americans living off reservations in Montana. Life expectancy is more than four years lower than the national average. Obesity is a common risk factor for many of the diseases this group faces, including Type 2 diabetes and heart disease, according to the Department of Health and Human Services.

The equipment being purchased with the grant funds includes 12 lead EKGs in ambulances and the technology to transmit those results to hospitals. In parts of Montana it might take up to two hours for a responder to get to a victim. Time matters when it comes to outcomes and the 12 lead EKG equipment lets responders transmit EKG results from a rural location to the hospital so a plan can be formed in minutes and doctors are ready when the patient arrives.

It all begins with a call to 911, said Joani Hope, Montana’s Mission: Lifeline director.

“Being able to provide information on your heart from the first few minutes that first responders are on the scene can help physicians make lifesaving decisions much earlier,” Hope said.
Wyoming, received a similar grant and has reduced deaths from 7.1 to 4.1 percent, according to data collected by the AHA.

American Indian heart health resources
Mission: Lifeline

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