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Amber Johnson

Written By: Sara Stout, Business Development Director

Heart disease hits close to home for Missoula’s Johnson family. Amber, a mother of three beautiful and creative children survived 32 years and two normal pregnancies only to find out while eight months
pregnant, she had been born with not one but two potentially life-threatening congenital heart conditions: Long QT Syndrome (a Sudden Cardiac Arrest electrical disorder) and Junctional Bradycardia (an arrhythmia disorder).

As the cardiologist who diagnosed her explained, Amber defied the odds for three decades, simply by staying alive. In 2013, Amber underwent surgery to have a pacemaker implanted which takes just seconds to shock her heart back to life when her heart malfunctions. Amber shares her story of survival to inspire others to take charge of their heart health and is thankful that she thrives today because of the research developed by the American Heart Association.

Unfortunately Amber’s eldest daughter, Laurelei, has the same potentially life-threatening congenital heart disease. Ten-year-old Laurelei shares her mother’s passion and energy for life knowing that one day she will be able to receive the same surgery as Amber. Until then, Laurelei will continue to carry her portable AED with her wherever she goes because it will save her life.

Amber and Laurelei shared their powerful story at the Go Red For Women Luncheon in Missoula on February 13th, reminding the 170 people in attendance that life is precious and to live every moment to the fullest. The Johnson family devotes their time to learning, creating, dancing, supporting each other and advocating for the American Heart Association.

Nearly 1 out of every 100 births a child is born with some form of heart disease.  Join the Go Red movement for families like the Johnson’s and in support of friends, family and other loved ones in the community who battle heart disease. www.goredforwomen.org

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Update on the Legislative Session

Guest Blogger: Marc Watterson, Utah Government Relations Director

We are in the final stretch of the Utah State Legislative Session and things really look to be heating up! What will be the final fate SB 164 “Healthy Utah”? Are e-cigarettes finally going to be treated like all other tobacco products?

While we won’t know the answers to these questions until next week, I’d like to take a step back and congratulate our many volunteers for their efforts at our recent “Heart on the Hill” Lobby Day!

My sincerest thanks to all those that were able to attend and to IASIS Healthcare for their sponsorship! This year IASIS provided health screenings to legislators and the public as well as lunch for our volunteers and the legislature. During our training session our volunteers had an opportunity to hear from a diverse range of speakers who are local experts in their related fields including:

  • Dave Gessel from the Utah Hospitals Association who shared his emotional story of witnessing his own mother suffer a stroke. Dave was fortunate to be in a position to recognize her symptoms and get her to the hospital in time. Our thanks to the UHA for their ongoing efforts to ensure that stroke treatment in Utah continues to be the very best. We look forward to working with them and the Department of Health in the coming months to see that Acute Stroke Ready Hospitals receive state recognition.
  • Tim Best from Davis School District who taught us about their innovative approach with “Healthy Bodies – Healthy Minds.” This program enhances children’s learning as teachers utilize physical activity through their lessons. Results from pilot schools have shown an amazing increase in student health and test scores as well as improved student behavior and less absences!
  • Representative Raul Ray joined us to discuss his tie to the American Heart Association. He was born with severe congenital heart defects. He also explained his fight against tobacco use in our youth and his efforts this year to ensure that e-cigarettes stay out of schools and are treated as other tobacco products.
  • Professor Chaney and some of his BYU Students presented on their work on Safe Routes to School. They have been working with a number of elementary schools throughout Utah County to identify problematic areas around schools that might put children at risk as they travel to and from school. You can follow their social media efforts by following #SafeRoutesUT. Special thanks to Benji Lambson, Kaylee Banner, Danny Doria, Maranda Christiansen, Kelsey Hamstead, Rachel Harris, Josinah Gachia for their efforts.
  • Lieutenant Governor Spencer Cox joined us to present on the Governor’s “Healthy Utah” plan. He spoke with our volunteers about the importance of engaging our legislators and letting them know how we feel about this issue as their constituents. In light of recent actions by the State House of Representatives in voting down the "Healthy Utah 2.0" plan passed by the State Senate, this truly underscores the need for all of us to get involved! For more on how you can help with this effort, please visit our You’re the Cure Action Page.
  • Dr. Ben Schmidt is an Emergency Physician from IASIS Health Care’s Salt Lake Regional Hospital. He shared first-hand accounts of individuals performing CPR and the success that comes from bystanders administering it right away. This work truly saves lives and underscores the importance of our efforts to help all people learn CPR.
  • We recognized Linda Mayne and Cybil Prideaux as our Volunteers of the Year for 2015. Linda and Cybil both work for the Utah State Office of Education and have been very instrumental in the success of rolling out our CPR in Schools efforts! Please reach out to your local High School to make sure they are participating in this core curriculum training.
  • Lastly, Speaker Greg Hughes joined us to share some of his best tips on how to be effective citizen lobbyists. His number one takeaway was the importance of developing relationships with our legislators - and not just during the legislative session.

My thanks again for all who were able to attend! Thank you all for your efforts to drive our life-saving mission forward.

*Note: This was submitted before the end of the legislative session. Check back next month for a full review of the final status on these and other issues.

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E-cigarettes Hit the Market and Everything Changed

Guest Blogger: Marc Watterson, Utah Government Relations Director

Last month I had a chance to share with all of you some of the efforts we are engaged in here at the AHA|ASA in regards to making healthcare affordable for all Utahns. The governor’s Healthy Utah Plan is a wonderful example of the state finding an affordable and economically feasible approach to enhancing medical insurance coverage here in the state.

This month I would like to address another serious issue that we will be advocating for up on Capitol Hill. Many of you are aware of the ill effects that tobacco and nicotine products have on our health. When one considers the amount of change this country has seen in the past 20-30 years, it is remarkable to see the differences. Smoking in restaurants, businesses, airplanes and other public places has been extinguished. Tobacco sales have continued to decrease as people become more aware of the devastating effect that cigarettes have on their health. Utah proudly boasts the lowest tobacco use in the country. In many respects, we are doing better than ever.

Then e-cigarettes hit the market – and everything changed. Consider this:

  • Recent studies show that as of 2013 e-cigarette use rates now exceed traditional cigarette use among youth.  Currently nearly 6% of Utah students admit illegally using e-cigarettes—a rate that has more than tripled in the last 3 years!
  • E-cigarettes contain harmful and addictive products like nicotine—a substance shown to have negative health and psychological effects, especially in adolescents.
  • Data shows that taxing tobacco products is an effective means of helping people to quit and deterring youth from starting. Taxpayers in the state currently pay $542 million each year to treat tobacco-related illnesses. Taxing all tobacco products – including e-cigarettes – ensures we are helping people to quit, discouraging youth use, and saving taxpayers millions of dollars in the future!

The American Heart Association advocates for bringing all tobacco products under similar licensing rules in order to keep new products out of the hands of children. Stores and retailers who sell e-cigarettes should be held to the same standards as those who sell other tobacco and nicotine products. Licensing allows for local health departments to conduct compliance checks to ensure these are not being sold to minors.

This year we ask you to join with us to urge legislators to bring all tobacco products, including e-cigarettes, under the same licensing and taxation rules, to help keep them out of the hands of children.

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Help us Take 5 for the Pledge

Thank you for your continued support of the American Heart Association’s lifesaving mission.

Recently, we developed a full and robust campaign to help us drive sodium awareness and reduction efforts, featuring the tagline: “I love you Salt, but you’re breaking my heart.”

The goals of the campaign are:

  • increase awareness of how much sodium we eat and the impact excess sodium has on our health
  • build a base of supporters who will actively engage with decision makers to effect policy changes that reduce sodium in the food supply
  • inspire behavior changes to reduce the amount of sodium people eat

The American Heart Association’s goal is to build a movement to change America’s relationship with salt. We ask that you take the pledge to reduce your sodium consumption.  We plan to use these pledges to urge the FDA and food manufacturers to reduce sodium in the food supply. Why the food supply? Currently, the average American consumes more than twice as much sodium than the American Heart Association recommends, and nearly 80 percent of it is coming from pre-packaged and restaurant foods. Plus, when you take the pledge, you will receive information, tools and tips as to how you can personally reduce your sodium intake – break up with salt and save your heart a potential lifetime of heartache! 

We need your help in extending our reach significantly beyond our current base of supporters.

To do this, we set up a simple “Take 5 for the Pledge” process for you to follow:

Visit the website: www.sodiumbreakup.heart.org/pledge

  • Take the pledge
  • Send an email to 5 of your friends, family members or contacts and ask them to take the pledge

Please email Cherish Hart at Cherish.Hart@heart.org or Josh Brown at Josh.Brown@heart.org if you have any questions or need additional information. I truly appreciate you taking the time to help drive our sodium awareness efforts. Together, we can make a difference.

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The American Heart Association's Go Red For Women Red Dress Collection 2015 Livestream

Join us for this exclusive virtual event where top designers and celebrities demonstrate their support for women's heart health during Mercedes-Benz Fashion Week. Heart disease is not just a man's disease. Each year, 1 in 3 women die of heart disease and stroke. We can change that--80 percent of cardiac events can be prevented with education and lifestyle changes. Help break barriers against heart disease and stroke by joining us for the Go Red For Women Red Dress Collection 2015 live online at GoRedForWomen.org/RedDressCollection on Thursday, February 12 at 8 p.m. Eastern. See you there!

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An update on One of Our Youngest Advocates - Coulter Cross

You might remember our littlest advocate Colter and his mom Bobbie from last year. With Congenital Heart Defect Awareness week upon us (February 7-14) we wanted to give you an update on how he is doing.  This message was written by his mom, Bobbie:

Colter celebrated his 3rd birthday in November as well as his 3rd Heart-a-versary! Colter's busy as ever playing with all of his favorite superheroes, Batman in particular! Colter's been perfecting his football moves as he wants to be just like his favorite football player, Russell Wilson. It's been such an honor to be a part of his journey to living a healthy life.

Medically, Colter is doing very well, he had a stent placed in his conduit this last August. Due to some complications during the stent placement, the routine angioplasty wasn't done on his pulmonary arteries. So we've had monthly checkups with his Cardiologist to monitor him very closely until June, when he'll have another catherization to open those arteries back up. I still can't believe some days that there's anything wrong with his heart, the amount of energy that boy has is incredible! He plays football from sun up to sun down. We look forward to 2015 and all the year has to bring!”

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Advocate Spotlight: Kami Sutton

As a survivor, volunteer, advocate and staff member – I wanted to share my story. 

I was recently featured on a Children’s Health Link special on our local NBC affiliate, KING5, with a story that highlights me as an 11 year old volunteer and fast forwards to where I am today. Please take a look and how far I have come and what the future holds!

Twenty-six years ago, I was born with a severe congenital heart defect (CHD). My parents were told that I might not survive the 30 minute ambulance ride from Everett to Seattle Children’s Hospital. As would become my goal in life, I did my best to prove the doctors wrong and to this day I still try to prove them wrong in the way I accomplish things they never believed possible. And always by my side, helping me achieve this was medical research and technology.

It seems that over the years, technology has always been one step behind me, as soon as I would need a new repair, it was found to be possible for pediatric use right in the nick of time. I have always been in the right place and the right time of technology and my next procedure is no different.

As I transition from pediatric to adult care at the University of Washington Medical Center, we are looking at my condition with fresh sets of eyes and new technology possibilities in hopes of avoiding a heart transplant which I have been awaiting for the past five years. A new pacemaker to improve my heart function could be the answer, but with my complex anatomy, my doctor thought it might be more difficult to place a new wire to the opposite side of my heart.

I had recently heard about research using patient-specific 3D heart models to practice cardiac ablations, so I asked the doctor if it might be helpful in my case. He was quite excited that I had suggested this and about a month ago, I underwent a cardiac CAT scan to start the process. I should be receiving my new pacemaker sometime early next year once he masters the procedure.

This technology and the possibility of me having better heart function and quality of life has been eye-opening and I again realize just how important the work we do at the AHA is. I have always had a passion for our cause but knowing that advances in medicine every day could lead to a better outcome for patients like me is what drives me.

Thank you to each and every one of you for supporting our mission, it means the world to me and every other CHD, heart and stroke patient out there!

For the full story, please click here.

Sincerely,

Kami Sutton

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Heart on the Hill Lobby Day is Less than a Month Away

Can you believe the American Heart Association’s annual Utah Heart on the Hill Lobby Day is just a few weeks away? Advocates from the across the state will gather at the Capitol on Friday February 6th to speak with our elected officials on issues that will help build a healthier Utah.

If you haven’t already reserve your spot today!

We will ask lawmakers to prioritize these three issue during the 2015 legislative session:
 

  • Safe Routes to School – This program is designed to make it easier and safer to kids to walk and bike to school but it needs proper funding.
     
  • Tobacco regulation – With the advent of new technology like e-cigarettes we want to make sure all products conform with existing laws.
     
  • Availability of high quality healthcare for all Utahns - Finding a solution that will help improve access to healthcare is imperative for the state.

It should be an exciting day so we hope you can join us. No prior lobbying experience is required as training will be provided that day.  If you’ve already registered, please don’t forget to invite your family and friends to join us by registering here

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Legislative Session is Starting

Guest Blogger: Marc Watterson, Utah Government Relations Director

I hope everyone had a wonderful holiday season these past few weeks! I had a chance to spend some wonderful time with my family and recharge my battery as we now prepare for the busiest season of all: Legislative Session!

As you are aware, the State of Utah will begin their annual legislative session in a few weeks. While every session has its moments, this year looks to be quite busy as our elected officials debate several issues that could have a profound impact on many Utahns. Often the American Heart Association is asked to “weigh-in” on several of these issues. As our top volunteers I wanted to give you a chance to see a bit of what goes on behind the screen and see where we sit on what will probably be the top issue of this session: Medicaid expansion.

By now, it would be hard to find many people in the state who have not heard of Governor Herbert’s “Healthy Utah” plan that would improve the access to affordable healthcare coverage for many in our State. We commend the state of Utah for trying to find an option that best suits the needs of all Utahns in regards to medical insurance coverage. We respect the delicate balance legislators face between providing a means of coverage for an at-risk population, while also ensuring the state meets its financial obligations now and in the future.

We understand that any effort to help underserved populations carries a significant financial cost to the state. When looking at it purely from a cost-perspective it can be tempting to go with the cheapest option. But as life all-too-often reminds us, the cheapest option may not always be the best option. While considering the need for enhancing insurance coverage we ask that lawmakers remember that in life there is a right way and a wrong way to do the right thing. We believe that the Healthy Utah Plan is the right way to do the right thing for the citizens of Utah.

Utah is known for its culture of hard-working and compassionate citizens. We feel that the Healthy Utah Plan finds the right balance between providing affordable coverage for those in need, while encouraging them to take responsibility of their own health. In 2011, hospital charges for cardiovascular disease alone exceeded $600 million in Utah. And in 2013, more than 4,000 Utahns died from cardiovascular disease and stroke, the number one cause of death in Utah. There is no question that if there was an increased access to care and an opportunity for individuals to affordably visit their healthcare provider, many of these lives would not have been lost.

While there will be many issues that the legislature will discuss in the coming months, few have the potential to effect so many lives as this does.

I hope that you will join us during this session for our annual Heart on the Hill Lobby Day on February 6th! It looks to be an exciting time for our staff and volunteers to assemble and have a chance to speak with our legislators about issues that our close to our hearts. Please bring your family and friends who are able to attend and don’t forget to RSVP for the event here.

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You're the Cure Year End Successes, Let's Celebrate!
It was another banner year for You’re the Cure advocates championing heart and stroke policy change across the country. Year end is a time to look back at what we achieved in states, think ahead to the work still to do, and celebrate the power of volunteers.
 
What did we accomplish last year?
 
 
Below are just three of many victories that made 2014 so successful.  

 

  • 35 states now have laws protecting our littlest hearts. Pulse oximetry, a simple detection screening for heart defects gives newborns a chance to survive thanks to early detection.
  • We reached a major milestone in ensuring all students learn CPR before graduating from high school. Now more than 1 million students, in 20 states, will graduate each year with this lifesaving skill.
  • 6 states increased funding for heart disease and stroke prevention programs.

 

Want to see more accomplishments? Check out the video below.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
These are just a few highlights and for the full story be sure to check out the state by state wrap-up online. We couldn’t achieve these great accomplishments without the power of YOU our advocates. Your work to educate lawmakers, recruit family and friends, and share your story and expertise are what makes change happen. So from your AHA staff partners a big, Thank You!
 
P.S. – You can help inspire others to join the movement by sharing our accomplishments highlight video.

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