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Will you help influence scientific research?

We need to hear from consumers like you as the American Heart Association (AHA) and the Patient-Centered Outcomes Research Institute (PCORI) partner together on the future of research. Your experience could lead to the next research study to improve heart disease and stroke treatment.

As an advocate we’ve asked you to speak out for increased funding for medical research and you’ve answered by contacting lawmakers and sharing your personal stories as survivors, caregivers, and loved ones touched by heart and stroke disease. Now we invite you to share your experience, the decisions made in determining your or your loved one’s treatment plans and the factors that influenced those decisions. If we better understand your experience it can help guide the research that will lead to better care tailored to the specific needs of patients.

If you’ve had a heart attack, suffered a stroke, or you know a loved one who has, your unique understanding could help guide research to solve un-met care challenges faced by individuals like you and improve heart and stroke treatment.

Here are the details:

  • We are focused on un-met challenges faced by patients and caregivers like you. 
  • To join this challenge, you’ll be asked to provide a written submission of your first-hand experience after a heart disease or stroke event.
  • The story and description of the concerns you faced and the decisions you made should be personal and not a general case.
  • A team of scientific professionals and patient representatives with expertise in heart disease and stroke will review your story. Learning more about issues and concerns important to your decision-making can help them improve experiences and outcomes for patients in the future.
  • If your submission is chosen, you could win $1,000 and possibly help shape the future of cardiovascular research.
  • All submissions must be received by June 8, 2016.

Please take this important challenge and share your insights. Your story matters. Take the challenge today!

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Alison & Vera Kathryn Biggers, Jackson

On February 16, 2016, we welcomed our daughter, Vera Kathryn, at 11:15 a.m. weighing 5 pounds 12 ounces. Vera Kate had a great first day of life and we were wrapped in joy with our first born. The morning of Thursday, February 18, the nursery brought Vera Kate in to eat around 2:30 a.m. but told us that she would need to return to the nursery in about 30 minutes because her oxygen saturation was a little low. In our sleepy fog, we didn’t think much of it. We fed her and sent her back. When Vera Kate came back to the room around 5:30am to eat again, we asked the nurse if they had rechecked her oxygen saturation and she said no, they were waiting on Dr. Robbins to come in for the day. Again – we didn’t think anything of it. When 8:30 a.m. came and we didn’t see Vera Kate, we got concerned and called the nurse. She said that her oxygen saturation was still low so they were going to do an echocardiogram on her just to make sure everything checked out normal. 

This was the point when we got concerned. Dr. Robbins came in and spoke to us. He explained that Dr. Braden, the pediatric cardiologist, was consulted to read her echo. study and he would come talk to us after he finished. Dr. Robbins explained that this Pulse Ox screening, that measures oxygen saturation in the blood, is a non-invasive measure that he did not want to overlook. Around 10:30 a.m., Dr. Braden came in to give us the news that our daughter had total anomalous pulmonary venous return (TAPVR). As one would expect, this came as devastating news to us – our two day old daughter has a congenital heart defect. Dr. Braden explained her condition with a drawing and reassured us that her heart could be fixed with surgery. He said he had already called Dr. Salazar at Batson’s Children’s Hospital and they were prepared for our arrival. After Dr. Braden left they finally brought Vera Kate back to our room to prepare her for her ambulance trip to Batson’s Children’s Hospital. Because I was not yet discharged from the hospital, my husband rode with her and I would have to come later. Letting someone take your two day old daughter away from you in an ambulance is probably one of the hardest things I have had to go through. Once I was discharged, I met my husband at the children’s hospital. They admitted Vera Kate to the Cardiac Intensive Care Unit (CICU) to do a full work up of her heart. They explained to us that they would get an echo of her heart as well as a full body work up to make sure there were no other issues present. Then they would present her case at the Cardiac Rounds meeting to determine their course of action. On Friday, February 19, the cardiac team met with us and explained that Vera Kate did have TAPVR which would require open heart surgery. Dr. Salazar explained that her condition was the best case scenario for a successful surgery. He then told us that conditions like this usually go undiagnosed until the child gets very sick 2-3 months down the road and that it was the oxygen saturation test that saved her. The plan was to give her the weekend and he would operate on her Monday morning at 7:00 a.m. We spent the weekend snuggling, feeding and spending every waking moment with Vera Kate as we weren’t sure what the future would hold.

On Monday, February 22, they came and took Vera Kate away for surgery, another hard moment for us. After four hours of surgery, we got the call that everything went well, her heart was fixed and she would be down soon for us to see her but to be aware they left her chest open to allow for the swelling to go down. The sight of your child after a serious surgery, much less open heart surgery, is a sight I can’t even explain with words. I kept telling my husband that “she doesn’t look real, she looks like a doll.”  Despite her condition, we stayed with her, talked to her, held her tiny hand and stroked her head all the while assuring her that she would be okay. Her tiny walnut sized heart was fixed.

Tuesday, February 23, the daytime nurse noticed that Vera Kate’s coloring was off meaning that her top half was pinker than the bottom half. Her face and left arm were very swollen but we were told she may have swelling in her face due to the bypass machine she was on during surgery. They successfully closed her chest and started to investigate her discoloration. They determined that Vera Kate had a blood clot in her neck where her central line was placed. Once they removed that line, her swelling went down tremendously but she would be on blood thinners for 3-6 months to ensure the blood clot dissipated.

Thursday, February 25, they removed Vera Kate’s dressing and her scar looked really good. It was healing great. They also moved us to a regular room. The next day, they did a repeat echo and both sides of her heart were the correct size. Prior to surgery, her right side was enlarged due to pumping larger blood volumes.  During our stay in the hospital, Vera Kate had some complications with lung functioning, but thankfully they were corrected with adjustments in her treatments.

Monday, February 29, Vera Kate had her stitches removed and they removed her oxygen to let her breath on her own. They turned off her monitor so we could get used to watching her for any changes in her breathing, coloring, etc. We were quite dependent on the monitor so this was a good thing!

Tuesday, March 1, they removed Vera Kate’s chest drainage tube. She still lost a little bit of weight but they upped her formula to a higher calorie intake as she was eating very well. They gave us the good news of getting to go home on Wednesday.

Wednesday, March 2, after her morning weight check Vera Kate gained 0.9 ounces! After two weeks and two days, we were finally going home as a family of three! Once we were finally home, we became her caregivers by giving her shots and medicines. This required us as parents to work as a team, and brought us closer together than we ever thought possible. Vera Kate is the center of our lives and we cannot thank the wonderful caregivers enough for all that they did for our family.  We are so thankful that Vera Kate did not have to leave the state to have this surgery and that we were able to stay close by in our own city.  It is wonderful to have a medical facility and surgeons in Mississippi to handle these fragile, newborn heart patients.

We are also thankful to the American Heart Association in Mississippi and their valiant efforts over a three year time span to get the Pulse Ox screening to become a requirement for all newborns in our state.  It truly is a life-saving test!

 --Written by Alison Biggers, Vera Kate's mother

 

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Mississippi Wraps Up Legislative Session

On Wednesday, April 20 the Mississippi State Senate adjourned Sine Die and the House of Representatives adjourned Sine Die the next day. This was a particularly rough year for state budgets as revenue projections were not met. 

STEMI SYSTEMS OF CARE AND STROKE SYSTEM OF CARE

If you remember, there was initial appropriations in the amounts of $250,000 for STEMI and $250,000 for Stroke Systems of Care to the State Department of Health appropriations bill in 2015.  The initial ask was for a total of $1 million.  After a particularly rough year for state agencies and the state budget, this line item was sustained at the funding that was appropriated last year – both programs at $250,000 each. This bill is now awaiting signature from the governor. 

The majority of state agencies had to face pretty drastic budget cuts this session. See article for more information. Unfortunately, there will be even more cuts to state budgets by the governor’s office. See article for more information.

As we move through this process, we will be monitoring agency cuts.

HEALTHY FOOD FINANCING/GROCERS INVESTMENT ACT

You may recall that two years ago, the legislature passed the Small Business and Grocer Investment Act. The original purpose of this bill was to create a Healthy Food Financing Initiative that would incentivize and create a program to draw small grocers to areas of the state that are in desperate need of access to healthy food. The bill was amended many, many times and weakened it to the point that it would do absolutely nothing. There was also a sunset clause added to it that would do away with the Act in two years (July 2016). 

House Bill 484 was created to extend the repeal/sunset date. Earlier in the session, the bill was remitted back to committee where it died. In a surprise move, the author of the original bill, Rep. Barker, had the Healthy Food Financing Initiative language added as an amendment to Senate Bill 2070. SB 2070 strengthens employer and facility guidelines for mothers desiring to nurse their babies.  This language was adopted and the bill was passed. It is now awaiting signature from the governor.

In discussion with Rep. Barker, he realizes that there is need for funding for this project.  We will work throughout the “off season” on activities to educate decision makers on the great need for funding and to allow PUBLIC funding. 

SMOKE FREE OCEAN SPRINGS

There is growing activity and coalition building in Ocean Springs for a smoke free ordinance push. The American Heart Association has partnered with the American Cancer Society Cancer Action Network, The Partnership for a Healthy Mississippi and the Mississippi Tobacco Free Coalition of Jackson County to form a local coalition to support this important effort. A coalition meeting is scheduled for Thursday, May 19 at the Ocean Springs Library from 11:30 a.m. – 1:30 p.m.  If you are interested in attending this meeting, please R.S.V.P. to Laurie Johnson at lauriejohnson@4elementscoaching.com

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Tina Lakey, Madison

This month our Advocate Spotlight story features Tina Lakey of Madison.  Tina currently serves as the chairwoman for the Circle of Red Committee in the Metro Jackson area. Circle of Red is a society of women who have the passion, the motivation and inspiration to drive and influence change in the community regarding heart health of women in their community and across the country.

Occupation: District Director, CenterPoint Energy

How long have you been a volunteer with the American Heart Association and in what capacity?  I have been an engaged volunteer over the past several years, and last year I became a member of Circle of Red. This year, I am serving as the chairwoman of Circle of Red. I have served on the Executive Leadership Team for Go Red for Women for the the past 2 years.

Who or what inspires you to help and volunteer your time to the work of the American Heart Association?  My husband had a stroke 24 years ago and this made us painfully aware of what can happen when we do not take care of our bodies. We did try to exercise and eat healthy, but probably should have done more.  Now, since I have learned so much through volunteering, I want to not only make sure my family is making healthy choices, but I want help get the word out in our communities of the importance of making sure everyone chooses a healthy lifestyle.

What heart healthy issue is most important to you and why?  Stroke Awareness-my husband suffered a stroke at the age of 31.

What are two ways you keep yourself healthy? Exercise and eating right.

How is your community healthy that makes you proud?  Over the past several years, many new fitness centers have opened in our city, giving more opportunity for residents to make sure we are working out and exercising to keep our bodies fit.

How do you stay updated on current public policies in your state? American Heart Association bulletins, going online and searching information.  Also, I receive informational emails from the Metro Jackson American Heart Association staff.

If you could help advocate for one change in your state, what would it be and why? Our schools and work places make healthy choices by what they allow in vending machines

Do you have a favorite American Heart Association/ American Stroke Association event you annually attend?  What is your motivation to participate? Go Red For Women….working with a group of dynamic men and women who see the value in educating our communities on what we need to do ‘kill’ heart disease!

Have you attended a state or federal lobby day on behalf of the American Heart Association?  If so, please briefly explain your experience.  I have not, but would like to.

What have you learned in your time being a You’re the Cure advocate?  The absolute importance of being aware, staying updated, and making others aware of the importance of making the right choices when it comes to getting checkups, eating right and exercising.

Why would you tell a friend or family member to join You’re the Cure?  To help save their life!

Tell us one unique thing about yourselfI love to write.  I am in the process of writing a children’s book on bullying.

Guest Blogger: Tina Lakey, pictured far right accepting the National Wear Red Day Proclamation at the Mississippi State Capitol in February.

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National Walking Day Proclamations Across Mississippi

National Walking Day is held every year on the 1st Wednesday in April.  The American Heart Association kicks off a month-long celebration designed to help us all become more active. On the day of the event, participants are encouraged to lace up their sneakers and take 30 minutes out of their day to get up and walk.

Three cities in Mississippi signed a National Walking Day proclamation this year in support of bringing awareness to the importance of daily physical activity among their residents.  These cities included: Pascagoula, Ocean Springs, and Pass Christian. 

Elizabeth Williams, resident of Pass Christian, as well as, an American Heart Association employee accepted the proclamation in Pass Christian last week during the city council meeting.  "I've lived in four other states besides Mississippi, and I can confidently say that Pass Christian is the most walkable community I've lived in.  I love the opportunity to safely walk with my family from my home to anything we may need or want.  It's not unusual in a week's time to walk to the bank, post office, coffee shop, library, park, or beach.  We really have no excuse not to get out and walk in our beautiful city.  I'm so thankful to live here."

Marlo Tipton, Jackson County Regional Director for the American Heart Association, put together a community gathering on National Walking Day for residents of Pascagoula.  Everyone met at Lighthouse Park on the Environmental Trail during their lunch break and walked for 30 minutes. 'It was a nice awareness event to get people out of the office and up on their feet to emphasize the importance of daily physical activity and its countless benefits.  Physical activity not only gets your blood flowing and heart racing, it has also been shown to improve your mood, Tipton mentioned.

To become involved next year in National Walking day, visit our National Waking Day webpage.  If you would like your city or town to participate in a National Walking Day proclamation next year, please email: gsa.advocacy@heart.org.

Pictured: Marlo Tipton, American Heart Association's Jackson County Regional Director and walkers who participated in the City of Pascagoula's Walking Day event on April 6.

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AHA President Says: The Science is Clear on Sodium Reduction

Check this out! In a new video, the President of the AHA, Dr. Mark Creager, explains that the science behind sodium reduction is clear. He says that robust evidence has linked excess sodium intake with high blood pressure, which increases the risk of heart attack, stroke, and heart failure. And, he points out that you can do something about it: join AHA’s efforts to demand change in the amounts of sodium in our food supply.

“Nearly 80 percent of the sodium we eat comes from processed, prepackaged, and restaurant foods” says AHA president Dr. Mark Creager. The video shows the 6 foods that contribute the most salt to the American diet: breads & rolls, cold cuts and cured meats, pizza, poultry, soup, and sandwiches."

To see the video, head over to our Sodium Breakup blog!

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The healthy difference a month can make

March is Nutrition Month, and a perfect time to get more involved with the AHA’s ongoing efforts to promote science-based food and nutrition programs that help reduce cardiovascular disease and stroke.

Every day, we’re seeing new initiatives: to make fruits and vegetables more affordable; to reduce the number of sugar-sweetened beverages that our kids are drinking; and of course, to ensure students are getting the healthiest school meals possible, all with the same goal: to help families across the country lead the healthiest lives they possibly can.

It’s also a great opportunity to lower your sodium intake. The average American consumes more than 3,400 milligrams of sodium per day – more than twice the AHA-recommended amount. Excessive sodium consumption has been shown to lead to elevated blood pressure, which increases the risk of heart disease and stroke. Visit www.heart.org/sodium for tips on to lower your intake and to get heart-healthy recipes.

However you choose to celebrate, Nutrition Month gives us all the chance to take control of our diets; to recommit to eating fresh, healthy foods; and to remember all month long that you’re the cure.

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Jan Collins, Madison

Our 2015-16 Mississippi Advocacy Committee is composed of 12 individuals from across the state with different occupations, who have a great interest in advocating for policy change for heart-health issues. Throughout the year, we will introduce some of our members. Today, we'd like you to meet Jan Collins of Madison.

Occupation: Executive Director of the Madison County Business League & Foundation

How long have you been a volunteer with the American Heart Association? Three years

Who or what inspires you to help and volunteer your time to the work of the American Heart Association? I attended a Go Red For Women luncheon and was touched by the personal stories of survival and the success of the American Heart Association's efforts.

What heart-healthy issue is most important to you and why? Raising awareness among women of the warning signs of heart attacks and stroke, and how they differ from men’s warning signs. My mother, father and mother-in-law all died of heart disease and my husband was diagnosed with two blocked arteries before his death in a car crash.

What are two ways you stay healthy? I try to maintain a healthy weight and lifestyle by working out and regularly exercising. I also have routine check-ups with all of my physicians and specialists.

In which way is your community healthy that makes you proud? My organization has worked closely with the American Heart Association and partnered with the Mississippi Tobacco Free Coalition of Madison, Yazoo and Holmes Counties to pass smoke free ordinances in all four municipalities in Madison County!

How do you stay updated on current public policies in your state? The mission of my organization is to unite the leading business owners, CEOs, presidents (decision makers) with elected/appointed officials on all levels from local to the Miss. delegation in D.C., to discuss topics that affect economic development such as healthcare, education, infrastructure and quality of life issues.

If you could help advocate for one change in your state, what would it be and why? It’s cultural in Mississippi. Our diet of food that we have grown up on. Our mothers and grandmothers cooked it! But we love it. We must educate the public to break the cycle!

Do you have a favorite American Heart Association/ American Stroke Association event you annually attend? What is your motivation to participate? The Go Red For Women luncheon and all the Circle of Red events! I like to be informed so I can utilize my position to educate my family, friends and relatives.

What have you learned in your time being a You’re the Cure advocate? That the American Heart Association plays a more prominent role in advocating for healthy heart issues than the business community and public could ever imagine!

Why would you tell a friend or family member to join You’re the Cure? We have all been touched by heart disease of a family member, friend or co-worker. Be informed so you can be committed to eating and living a healthy lifestyle, if not for yourself, for your children and family.

Tell us one unique thing about yourself. I am a cancer survivor! I have cancer and heart disease in my immediate family.

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Mississippi Will Now Require Nutritious Snacks in Schools

The Mississippi Department of Education will now require snacks sold at school to meet the same nutritional standards as breakfast and lunch. The education department voted and passed the rules on Feb. 18 that will apply to any foods sold either in vending machines or a la carte in the lunch line to the state’s 490,000 public school students.

Grain-based products must be at least 50 percent whole-grain. Other products must have fruit, vegetable, dairy or protein as a first ingredient. Fewer than 35 percent of calories must be from fat, and the rules limit sodium, sugar, caffeine and total calories.

Junk food fundraisers — like doughnuts, pizza and candy — are also out the door in Mississippi.

Read more on heart.org.

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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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