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Spencer's Story - looks can be deceiving

Written by Amy Norton, Spencer's mom

You NEVER think “it will happen to you” but… “it” happened to my family, my son. At only ten weeks old my son was fighting for his life. This is his story…

Spencer was born at home, on 11/08/13, with a team of experienced midwives. He was a healthy 9.1lbs., and appeared completely typical. He was perfect. Absolutely perfect. Except he had a secret, Congenital Heart Disease. He kept this secret for a long time. Almost too long.

At 24 hours postpartum, our midwives came back to our house to check on Spencer. Again, everything appeared typical, no physical signs of distress. Therefore, no oximeter was ever placed on him.

On day 7 Spencer was seen by our family doctor. Again, he appeared typical. He was back to his birth weight. Latching on and eating well. His body was doing an amazing job at compensating for his lack of oxygen. Too good of a job. No one ever thought it medically necessary to check a “healthy” boy’s oxygen level. So, he continued to hold on to his secret.

December 21st, Spencer caught his first cold along with my husband, daughter and myself. We got better after a few days. Spencer stayed sick, in fact, he was getting sicker. Worry set in.

I took Spencer back to the doctor.  He was now 8 weeks old. At this appointment I expressed my concern about his cold. I emphasized that something didn’t seem right. I asked, “could it be allergies or asthma?” I didn’t know to ask if it could be heart disease, I wish I did. Spencer had only gained 6 ounces over his birth weight. STILL no oximeter was placed on him. I was advised to come back in two weeks. However, Spencer didn’t made it two weeks.

My husband and I had had enough. Spencer was still sick, his skin started to look dusky and we knew something was wrong. We called the local children’s hospital and spoke with a consulting nurse. She immediately said to call 9-1-1. The medics arrived. This was the first time an oximeter was placed on my son!  He was now 10 weeks old.

Trauma began. Things progressed from a phone call to an airlift in a matter of hours. Before we knew it, we were standing over our happy baby in an induced coma at Seattle Children’s Hospital. This is where, literally, at the eleventh hour, we learned of Spencer’s secret. Our sweet boy was born with Congenital Heart Disease.

Things quickly went from bad to worse! ONE day after getting our son to the hospital he was placed on life support. He remained in the hospital for 6 weeks. Fighting for his life.

If an oximeter was placed on Spencer at 24 hours old, he never would have got as close to death as he was. Yes, he still would have had heart disease. Yes, he still would have needed open heart surgery. But he never would have suffered the way he did. If my husband and I were not advocates for our son I am afraid his outcome would have been different. An unbearable reality.

An oximeter test is so simple. It saves babies lives! As a mother who has lived through the unbearable, I ask, why is it not a statewide requirement that every child not tested? No matter where a baby is born in Washington, it should be protected from a tragic story like Spencer’s. Spencer is a miracle. We are blessed he survived. NO baby should suffer like him, not when it is so simple to detect.

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A Powerful Day in Olympia

Guest Blogger: Kami Sutton, Grassroots Coordinator

On February 3, a group of nearly 40 volunteers and 20 AP Government students from Eastlake High School in Sammamish gathered at our State Capitol for our 2015 American Heart Association Lobby Day. The morning started with informative presentations by Lindsay Hovind, our Government Relations Director and Mike Shaw, a contract Lobbyist with the American Heart Association, who went over the current climate in Olympia including budget progress and what is expected during this year’s legislative session.

While our adult volunteers were being briefed by Lindsay & Mike, our student advocates were already busy advocating for Safe Routes to School out on the front lawn of the Capitol. They held signs, and gave speeches on the importance of safe walking and biking paths for students to use to get their daily exercise while walking and biking to class. Along with our partners at the Childhood Obesity Prevention Coalition (COPC) the students did a great job getting our message out there of the importance of funding these projects that provide the necessary improvements for the students to get to school safely.

Back in the training room our students joined us for presentations by Representative Marcus Riccelli who sponsors House Bill 1285 which will mandate Pulse Oximetry Screening as part of the Newborn Screening panel to help detect Critical Congenital Heart Defects (CCHDs) in newborns in hopes of saving tiny lives. Joining us in Olympia were several CCHD survivors including 3-year-old Carissa Henderson and her family who helped make a powerful statement as to why this is such important legislation.

Our final presentations, made by Vic Colman, the Executive Director of COPC, gave us more details on the Safe Routes to School program and what funding by the legislature could do to help our communities make these vital improvements with sidewalks, crosswalks and proper signage to make this “healthy choice, the easy choice”. Our other legislative ask of the day was Tobacco Prevention and Control funding, which last year we were successful in securing $1.5M for the program, but with tobacco use still being the number one cause of preventable death, we need more funding to keep cessation programs alive and ready for citizens to use.

We had a quick question and answer session which made for great discussion with the presenters including Representative Riccelli who answered questions for the students about his advice on getting involved with state government and the importance of staying in touch with their lawmakers.

After a great morning training and a wonderful heart healthy lunch, each group got together to prepare for meeting with their lawmakers and planned out introducing our three agenda items to their Representatives and Senators. Each group spread out across campus to attend the meetings and we gained a lot of support for the issues at hand.

All in all this was a wonderful day with great volunteers and the training of many future advocates and possibly even some future lobbyists or lawmakers! Everyone had a great day and we rallied some amazing support from our Washington State Lawmakers that will boost our issues to the forefront of the chambers discussions in the future.

To stay up to date and involved with our 2015 legislation, don’t forget to visit www.yourethecure.org regularly and take action.

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Eastlake AP Government Students

On February 3, the Advanced Placement Government class from Eastlake High School in Sammamish, WA traveled to Olympia to join the American Heart Association / American Stroke Association for its 2015 Lobby Day. Eastlake’s AP students joined other advocates including heart and stroke survivors, board members, physicians, and parents to advocate for heart-health policies. It was particularly impactful to have students advocating for funding for youth tobacco prevention and Safe Routes to School at this year’s Lobby Day.

The students began their day with a rally along Capitol Blvd. waving signs to build awareness for the need for increased funding for Safe Routes to School. With just one in four projects currently funded, the students went to work to ensure students across the state can safely walk and bike to school.

The students worked hard to prepare for this day of advocacy. Their preparation showed in special meetings with their district’s Senator, Andy Hill and with Representative Marcus Riccelli, who sponsors the AHA-supported bill to screen all newborns for critical congenital heart disease.              

Legislators, staff and volunteers all noted the students’ professionalism and enthusiasm. These youth advocates made a great impression on the decision makers who have the power to improve health for youth across Washington.

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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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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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Washington's 2015 Legislative Session is Under Way

The 2015 legislative session kicked off on January 12 and with your help we plan to make it a big year for Heart and Stroke legislation!

During session we will ask lawmakers to prioritize funding for programs that are vital to building a healthier Washington.
 

Safe Routes to School - This programs makes it easier and safer for kids to walk and bike to school. Studies show that kids who are physically active learn better and this program helps build more walkable communities. Currently only 1 project can be funded for every 4 requests received so we will ask lawmakers to increase funding for this program.

Quality Systems of Care – Improving the existing emergency cardiac and stroke system of care in Washington will help ensure patients are taken to the right hospital and receive the right treatment as quickly as possible.

Tobacco Prevention – We will pursue sustainable funding for the state Tobacco Prevention and Control program. We know that for every dollar the state spends on prevention five dollars is saved on hospitalizations.

Obesity Prevention – We support improved access to healthy food and beverages in school through funding for the school kitchen renovations and water bottle filling stations.


We hope we can count on you for your continued support in the upcoming legislative session. We could not do the work we do without your help. Keep an eye open for our emails and take action when you are able.

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NEHA AGGARWAL

Neha Aggarwal, You’re the Cure Advocate

One day while he was walking through the park, Neha Aggarwal’s maternal grandfather suddenly fell to the ground—he had unexpectedly suffered a stroke. Before the stroke, her grandfather had been very active mentally, physically, socially, and professionally. Although the stroke dramatically changed every aspect of his life, he continued to step up to the challenges of life and showed great strength and positivity.  He passed away 20 months later, and Neha feels she was blessed to have had the chance to know and love him.

But her family’s history of stroke and heart disease doesn’t end there.

  • Her paternal grandfather also passed away from a stroke, before she was even born.
  • Her father’s older brother passed away from a heart attack.
  • Her father, a cardiologist, has diabetes and takes medication to control high blood pressure and cholesterol, which are risk factors for heart attack and stroke.

Neha’s family history and life experiences have prompted her to aim for a heart healthy lifestyle.  She strives to make exercise and a heart healthy diet a part of her daily life.

Involvement in You’re the Cure:

Neha first became interested in volunteering with the American Heart Association’s (AHA) grassroots network, You’re the Cure, in 2012 when she heard about AHA’s Lawyers Have Heart run in Washington, DC. This event really called out to her, as she is not only a lawyer but one who specializes in health policy. Lawyers Have Heart seemed as if it were created for her, aligning with both her passion for law and for health. Volunteering at this event in 2012 kicked off her involvement with You’re the Cure and she has been an active advocate ever since.  

What She Does:

Since Neha became a You’re the Cure advocate in 2012, she has volunteered at a number of events in Washington, DC, including Heart Walk, Lawyers Have Heart, and Hearts Delight. She actively recruits others for You’re the Cure. Her passion for the mission of AHA is contagious and inspires others to join in this important work. As Neha became more deeply involved with AHA events, she wanted to do more.

She was energized when she discovered the opportunity to work more proactively with You’re the Cure, advocating directly to her lawmakers for policy change. This exciting world of policy change opened the door for her to more fully utilize her education, passion, and training in volunteer advocacy work.  Neha initiated regular communication with AHA staff to coordinate her efforts, and her work on You’re the Cure’s advocacy campaigns has been packed with meaningful action. She has had frequent contact with DC Councilmembers, via phone calls and emails, urging them to support important legislation. Recently, she also submitted a letter to the editor to encourage readers to follow her call to action and appeal to DC Council.

What she finds most satisfying about working with You’re the Cure is the strong impact that she can have at the macro level. “Getting legislation passed can have such far-reaching effects! It is exciting to do things that have a large-scale impact. I feel like I am making a difference.”

 Why does Neha do this?  She says, “Improving Lives is Why”

Have you volunteered for the AHA like Neha? Send us photos of yourself in action to advocacydc@heart.org. We will use as many as we can to create a new Facebook cover photo!

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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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Couldn't We all Snack a Little Healthier?

Guest Blogger: Lindsay Hovind, Government Relations Director

Earlier this year the United States Department of Agriculture rolled out new guidelines that will help ensure our kids have access to healthy food in school a la carte lines, school stores and vending machines. Smart Snacks emphasize whole grains, low sodium, low fat, low sugar foods. By ensuring students have healthy options, Smart Snacks will help them make healthy choices. 

It’s great news that kids will have healthier options during the school day, but what about at home? What about us adults? Fall is a great time to take advantage of tasty seasonal produce, or update a favorite holiday recipe with a healthy twist. Here are a few Simple Cooking with Heart recipes to get you going!

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Eric Rothenberg: Top Advocate and Top Fundraiser

This fall Heart and Stroke Walks took place across Washington to raise funds to support the American Heart and Stroke Association’s lifesaving mission. With events in Spokane, Tacoma and Seattle, more than 13,000 walkers (including the Seattle Seahawks’ mascot, Blitz!) turned out to honor loved ones and celebrate healthy lifestyles. Thank you to all of our walkers who helped to raise nearly $2 million across Washington!

This was a particularly special year for our Advocacy family; You’re the Cure advocate Eric Rothenberg’s team “Team MI” was the top fundraiser among Seattle’s community teams. This September marked the 5 year anniversary of Eric’s sudden cardiac arrest. To mark the occasion he set himself the goal of raising $10,000, which he achieved!

In addition to his amazing fundraising efforts Eric was very involved in our effort to add CPR training to high school health class curriculum. Because of his efforts thousands of high school students in Washington will be trained each year on what to do in case of an emergency like the one he suffered 5 years ago.

Thank you Eric for all that you do!

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