Missouri

Kelly Manz, Missouri

Chloe's Law, named after Kelly Manz’s daughter, will finally reach the Governor’s desk in 2013!

Kelly has worked long and hard to ensure that all Missouri hospitals will be required to screen newborn babies for congenital heart defects with Pulse Oximetry before they leave the hospital - it’s an easy, painless, fast and live-saving screening.

“When Chloe was born, she passed all of her newborn exams and was considered by all accounts a healthy baby. We would have taken her home 2 days later, but I had a feeling something wasn’t right. When Chloe was only nine hours old, she seemed as if she wasn’t breathing right so I asked the nurses to come in and re-examine her four different times. Each time they reassured me that everything was fine. I was finally able to convince a nurse to take Chloe back to the nursery. One of the first things they did was a pulse oximetry screening and Chloe scored a 65%. Anything under 94% is an indicator of an underlying health concern.

We are lucky that the pulse oximetry screening detected my daughter's rare heart defects shortly after birth and saved her life. It still haunts me to this day – the thought that we would’ve been sent home with Chloe and her four undetected heart defects and who knows what would have happened. I’ve read too much and heard too many personal stories and tragedies to stand back and not try to educate and help other families.”

Chloe inspired the law, but it’s not for her. It’s for all of the heart babies yet to come. For the babies born with CCHD that go undetected through the ultrasounds and the examinations at birth. Chloe’s Law is for them and now awaits the Governor’s signature!

Guest Blogger Kelly Manz describes why having Chloe’s Law finally reach the Governor’s desk is the ultimate Mother’s Day gift!

When I began this journey in 2009, I had no idea what I was getting myself into. I was on a mission and I jumped in head first! I started with baby steps and read what I could about the Missouri Government. Each year, I learned more and more about the bill process and all the political stuff that goes with it!

So much has changed over the last four years. During my first two attempts with Chloe’s Law, a few major organizations actually fought against me. There were many research studies out there discussing the benefits of Pulse Oximetry Screening, but it hadn’t received the recognition yet as a reliable way to screen for CCHD. Pulse Oximetry Screening will not detect all CHDs, but it will detect the most critical (referred to as CCHD) which, ironically, often go undetected until several days or weeks after birth.

That changed in Fall 2010 when the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children sent a letter to Kathleen Sebelius and voted to add Congenital Heart Defects to the newborn screening panel. Receiving federal support was a huge turning point.

It took a few years, but I finally got the support and backing I needed to get this done. Add politics into the mix and well, four years may not be THAT long….(Bill recap: 2010 – HB1604, 2011 - HB838, 2012 - HB1058)

Since I began my fight for Missouri to make pulse oximetry screening mandatory on every newborn baby throughout the State before discharge from the hospital, many other families have since reached out to their House and Senate and have gotten their own Pulse Oximetry Screening Law passed (or an Executive Order has been issued or it has been added to their Newborn Panel as a regulation or rule change, depending on the State). We are now a huge network of families, a movement if you will, fighting for the same cause nationwide! I love hearing updates as each State gets their bill passed (approximately 20 so far!) and there are still States with bills currently in the works for 2013 (approximately 19) and I can’t wait to hear their success stories as well!

Read the rest on Kelly's Blog!

330 fewer women are dying per day, thanks to the Go Red For Women movement, which celebrates 10 years in 2013!  Since 1984, more women than men have died each year from heart disease and the gap between men and women’s survival continues to widen. Heart disease in women requires more attention, more research and swifter action. It’s time to shout louder, stand stronger and demand change together.  It’s important to let your Legislator know how important these issues are to you.

What steps are you taking to improve your heart health?  Are you trying to exercise more, eat better or get more sleep?  No matter what it is, every little bit helps, so stick with it. Learn the steps the American Heart Association is taking to fight for your heart health. Join us at YoureTheCure.org and vote for the issues that are important to you.

 Their knowledge of CPR and quick thinking allowed Joe Bell to beat the odds during his life threatening cardiac arrest.  Joe’s story reinforces the value and importance of teaching the lifesaving skill of CPR.

 Shelley Lewis pumped Joe Bell’s chest roughly 1,500 times in 15 minutes. The two-inch-deep compressions cracked ribs, broke his sternum and punctured a lung.  They also saved his life.

Bell, who builds upscale homes in Chicago, was visiting the Kansas City area on Oct. 20 to see family, including his daughter, St. James Academy volleyball coach Nancy Dorsey.

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“Guest blogger, Kevin Harker, Midwest Affiliate Executive Vice President reminds us how research is saving lives…”

Not too long ago, I had the opportunity to reconnect with a friend of mine from St. Louis, Toni Reel, who is a longtime volunteer and former employee of the American Heart Association. Toni was diagnosed at age 3 with Wolff-Parkinson-White Syndrome, a condition which affects how the heart beats and causes rhythm abnormalities.  Toni began taking heart medications as a child, which allowed her to enjoy normal childhood activities like running, playing soccer and cheerleading … but also required a hospital stay at least once a month for a week at a time either for an attack or to modify her medications.  Disruptive?  Yes. Scary?  Yes. Painful? Yes. Expensive? Yes. But that was just the way it was.

Until research funded in part by the American Heart Association changed all that. At age 18, Toni learned of a new procedure called radiofrequency catheter ablation, which uses heat to physically destroy a small section of heart tissue causing abnormal electrical activity. Toni had the procedure and felt immediate relief.

There are more than 82.6 million people like Toni, living with some form of cardiovascular disease, many of whom have learned to live every day with constant pain or fatigue; many of whom rely on medicine to allow them to participate in normal activities that the rest of us take for granted; many of whom sit on the sidelines, unable to participate in normal activities because the strain on their heart could be life-threatening. 

For these millions of Americans, ongoing research is essential to their future. Since 1949, the American Heart Association has invested $3.4 billion in cardiovascular research, which has led to lifesaving scientific advances such as the first artificial heart valve, techniques and standards for CPR, implantable pacemakers, treatment for infant respiratory distress syndrome, cholesterol inhibitors, microsurgery and drug-coated stents. In 2010-11, the American Heart Association funded nearly $111 million in research, but lacked another $139 million to fund 987 other highly meritorious studies; forcing many potentially lifesaving projects to be shelved.

This holiday season, as you consider where you should invest your time and resources, I urge you to think of the impact you can make for millions of Americans by supporting the American Heart Association. Every 34 seconds, someone has a heart attack. Six seconds later, someone has a stroke. Approximately 2,200 people lose the fight against cardiovascular disease each day.  But you can help change that.

Your donation helps the American Heart Association protect lives all year long by allowing us to fund research, education and advocacy programs to fight heart disease and stroke.  Visit heart.org/donate to give today. To learn more about supporting our mission with a gift through your estate plan, visit heart.org/plannedgiving or call 1-888-227-5242.

The American Heart/Stroke Association is committed to identifying and supporting specific science areas deemed critical to achieving our mission and strategic objectives. Foundation and corporate support for such strategically focused research, as well as partnerships with other professional organizations, allow the AHA to fund special initiatives or awards.
The American Heart Association has funded major medical breakthroughs over the years, including the first artificial heart valve, implantable pacemakers, and techniques and standards for CPR.  The American Heart Association’s funding of basic and clinical research produce significant results and discoveries.  We are recognized as a worldwide leader in cardiovascular science.  Countless top cardiovascular scientists throughout the world are linked in some way with us.
Supporting research for heart disease and stroke is a top priority for the American Heart Association.  To learn how you can take action to advocate for more federal research funds, visit Research Saves Lives!

As you prepare for this busy time of year both with your family and service to our state, take care of yourself by eating healthy.  Since it is the season of giving, I'd like to take this opportunity to give something back to you. Simple Cooking with Heart is a new program designed to teach Americans how to cook easy heart-healthy meals at home. It offers quick, budget-friendly recipes, tools, basic skills and techniques to get you started. Simple Cooking with Heart includes online how-to videos, tips and 23 great recipes. It also has a free downloadable "Host Kit" -- a perfect resource for you during the holidays, which encourages you to host in-home cooking parties with your family, friends and neighbors. Visit www.heart.org/simplecooking to get started.

Thank you for all you do!  I look forward to working with you in the upcoming year to make your state a heart-healthy place to live.

This message of thanks was created especially for you, and we wish you and your family a peaceful and memorable Thanksgiving!

In the weeks leading up to Election Day we witnessed passionate Americans who voiced their opinions on candidates and were engaged in the major issues. It would be a terrible waste if all that purpose and energy are allowed to wane now that the election is over!

Voting is only the first step in our democratic process. Now that you’ve voted, we encourage you to maintain that momentum by getting in front of your legislators and telling them about the issues that matter to you.

One of the most important issues that affects ALL of us is healthcare. Talk to your legislator about the importance of access to care, obesity prevention, tobacco control and other legislation that directly affects your health and your wallet. To prepare for a meeting with your legislator, check out our free resource guide from the American Heart Association that highlights important health-related issues on the federal and state levels.

Regardless of your political leanings, don’t stop the great momentum that has been building over the last months and years! Only by staying informed and actively engaged, can we improve the health of the people in our communities and all Americans.

Hello advocates!  Just wanted to take a moment today to say Happy Halloween.  If you're in the mood for something scary and if you like zombies, check out this awesome video from the Heart and Stroke Foundation of Canada. 

 (Please visit the site to view this video)

After watching the video, if you are inspired to learn CPR you can visit www.heart.org/handsonlycpr and learn how to save a life with two simple steps:

1. Call 911
2. Push hard and fast in the center of the chest