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Advocate Spotlight: Annette Santilli, West Virginia

Annette Santilli West Virginia

Annette Santilli is certainly a Hero in our eyes. In just two short years as a You’re the Cure advocate, she has taken more than one hundred online and offline actions to far surpass even the highest You’re the Cure rank of "Hero."  She is a passionate volunteer-advocate who can always be counted on to go above and beyond what is asked. Annette is a "regular" at the West Virginia Capitol, frequently making the 2 1/2 hour drive to speak out on issues she believes in. During the hectic West Virginia Legislative Session, you can usually find her making dozens of last-minute phone calls to lawmakers to help protect smoke-free air, testifying with her young daughter, Stephanie, before legislative committees, delivering petitions to lawmakers or speaking to other potential advocates.

Thank you, Annette, for being a You’re the Cure Hero and a champion for the health of West Virginians!

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Advocate Spotlight - TJ Haynes

For TJ Haynes it was a matter of time. TJ recently threw out the first pitch at a Mustangs game in Dehler Park to promote the AHA’s Raise the Roof in Red campaign after suffering a heart attack just a few months before.

On May 25, 2015 TJ had gone to the local shooting range in preparation for the annual Quigley Buffalo Match. The days leading up to the 25th he had experienced heartburn and back pain but didn’t think much of it. But after a short period of time at the range he found himself short of breath and in pain.

He called his wife to tell her he wasn’t feeling well and asked her to come pick him up. While he waited another shooter at the range noticed his condition and quickly dialed 911 when he told them he was short of breath and experiencing chest pain.

Thanks to the quick actions of those around him TJ was rushed to the hospital in an ambulance containing a 12 lead EKG machine that sent a snapshot of his heart ahead to the Billings clinic. By sending this snapshot ahead the hospital was able to know what they were dealing with and how to treat it as soon as he arrived. This allowed his clogged artery to be opened just 46 minutes from the onset of the attack.

This amazing equipment had been installed just one day earlier as part of the Mission Lifeline initiative that is largely funded by a grant from the Leona M. and Harry B. Helmsley Charitable Trust.

Today TJ is doing much better. He is in cardiac rehab, is working on his diet and is overall doing well.

TJ is thankful for the actions of those around him and the technology that was available to help him when he needed it most.

 

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Kimberly Goodloe, Atlanta

Our 2015-16 Georgia 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 long time volunteer, Kimberly Goodloe of Atlanta.

Occupation: American Heart Association Advocate Hero and Volunteer

How long have you been a volunteer with the AHA and in what capacity? Since, May 2010.

[Volunteer Advocacy Resume]

May 2010:  American Heart Association ( volunteer)

November 2011:  Go  Red For Women Passion Committee Member

2013:  You’re The Cure Advocate

October 2013 :  Georgia Advocacy Subcommittee Member

January 2014 & 2015 :  ML KING Celebration/United Ebony Society; Health Fair Coordinator  :  Lawrenceville, Georgia

July  2015:  National Volunteer Ambassador; American Heart Association’s Heart Valve Disease Program

July 2015: Community Champion:  American Heart Association Heart Walk  Committee

July 2015:  Vice Chair:  Georgia Advocacy Subcommittee Member

Who or what inspires you to help and volunteer your time to the work of the American Heart Association?  I love to encourage heart/stroke patients and their caregivers by sharing my story of survival  from three  surgeries because so many people are suffering in silence.

What heart healthy issue is most important to you and why?  Staying Active: it’s good for my heart.

What are two ways you keep yourself healthy?  Making healthy food choices & exercising

How is your community healthy that makes you proud?  Smoke free air,  beautiful community parks, many sidewalks, and bike lanes

How do you stay updated on current public policies in your state?  By responding to the You’re The Cure Alerts  & reading valuable information posted on the You’re The Cure & American Herat Association website(s)

If you could help advocate for one change in your state, what would it be and why?   Advocate for the uninsured; because so many people are in need of affordable  healthcare in our state.

Do you have a favorite American Heart Association/American Stroke Association event you annually attend?  What is your motivation to participate?  I love attending the annual Go Red For Women Luncheon , Go Red Lobby Day at the Georgia State Capitol and Metro Atlanta  Heart Walk. During Lobby Day, I am given the opportunity to share my journey and health care topics with state lawmakers. At the luncheon, I enjoy the great food, fun and fellowship with other volunteers, survivors and staff.  I enjoy the Heart Walk because I love raising funds to support medical research and walk in honor of every family affected by heart disease and stroke.

Have you attended a state or federal lobby day on behalf of the AHA?  If so, please briefly explain your experience. Yes, I traveled to Washington D.C. in April 2013.  I attended the Medical Rally and American Heart Association You’re The Cure Lobby Day.  It was such a pleasure to attend the rally and meet with the various state lawmakers. Sharing my heart journey and using my voice to advocate for the uninsured patients throughout the state of Georgia brings me great satisfaction.

What have you learned in your time being a You’re the Cure advocate?  It’s important ( as an heart disease survivor) to use my voice, gift of service to help empower the community.

Why would you tell a friend or family member to join You’re the Cure?  To learn more about public policy and encourage them to become educated in all the wonderful things the American Heart Association is involved in for healthy changes not only in Georgia, but across the nation.

Tell us one unique thing about yourself.  Despite my daily health obstacles,  I keep moving forward helping the community live a happier, healthier, lifestyle.

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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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Share Your Story-Heart Walk Survivors

Life is Why!

Everyone has a reason to live a healthier, longer life.

The Heart Walk is the American Heart Association's premier event in the community. It promotes physical activity and heart-healthy living in a fun, family environment.

It is a time of celebration for those who have made lifestyle changes and encourages many more to take the pledge to live healthier lifestyles while raising the monies needed to fund life-saving research and education, advocate for health and SAVE lives!

Come join us for the Kansas City Heart Walk!

Where:

Power & Light District
Grand Boulevard
Kansas City, Missouri, 64106

When:

Starts: Sat, 18 Jun 2016 8:00:00 AM
Ends: Sat, 18 Jun 2016 11:30:00 AM

Registration Fee: Free event. Participants are encouraged to collect donations.

REGISTER HERE FOR THE UPCOMING HEART WALK.   

It's easier than ever to support the American Heart Association.

For more information contact:
Natalie Cronkhite
913-652-1901
natalie.cronkhite@heart.org

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Share Your Story-Derek Means

Derek Means Iowa

Derek Means is a typical 12 year old boy who enjoys playing basketball and video games.  You would never know that he was born with a congenital heart defect and has undergone 3 lifesaving surgeries, with another in his future.  Derek is thankful to the American Heart Association and his wonderful team of doctors and nurses for saving his life and giving him the opportunity to raise awareness as this year’s Central Iowa Heart Walk Ambassador.  This year’s Central Iowa Heart Walk will be held on Saturday, April 16, 2016.  Click Here to join Derek and so many others in their fight against heart disease and stroke.

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Share Your Story-Benny

Benny Missouri

Benny was born on July 18, 2014 at 37 weeks with a Congenital Heart Defect.  He is our second blessing and little miracle baby. His diagnosis is Double Outlet Right Ventricle with Sub-aortic Ventricular Septical Defect, Supraventricular Tachycardia, Dextrocardia, Heterotaxy with Asplenia, Malrotation of the intestines and Wolff-Parkinson-White Syndrome. In simple terms, Benny had a large hole between the both ventricles, his aorta and pulmonary artery is on the right ventricle, he can go into episodes where his heart can beat up to 260 beats per minute, his heart and stomach are on the right side of his body, his intestines are not rotated properly and can twist and he has no spleen. Since he has no spleen, Benny needs to take antibiotics twice a day for the rest of his life and we need to be extra careful he doesn't get sick so he doesn't end up in the ER.

How did all this happen you ask? Well, no one really knows yet. The genetics Doctors are still doing studies to research if it was genetics or just something random that happened. Throughout my entire pregnancy I was super healthy and did everything I was supposed to. We didn’t find all this out until I was 35 weeks pregnant. I felt like something wasn't right and had gone to the Doctor, who then sent me to the hospital, who then confirmed that he was in and had a hole in his heart. The local hospital couldn’t tell us much since they were limited on testing so they decided to send me to Barnes Jewish Hospital in St. Louis MO. They ended up flying me up there the same night and testing began the very next morning.

After several tests, ultrasounds and EKGs and ECHOs later, all was confirmed. We were devastated that our baby was going to have to go though some extreme challenges right as he was born, but all the Doctors were hopeful. We owe so much and are so grateful to have a team of wonderful doctors. Benny had to stay in the hospital in St. Louis for a month and a half before we could bring him home. While at the hospital, Benny had to get a PA band around one of his pulmonary artery to slow down the blood flow into his lungs. That was a temporary fix until he received his open heart surgery to repair the hole in his heart in May 5, 2015. We've had a few other scares where we've had to rush him to the ER in St. Louis because of his SVT (fast heartbeat).  During one of his episodes, it took 10 hours to get him back to normal heart rhythm. The doctors had to shock his heart 3 times and drain fluid from around his heart.

When I became a heart mom I knew I had to do several things for my son Benny, one of which was be an advocate for him and for Congenital Heart Defect Awareness. Many people are not quite familiar about Congenital Heart Defects. They don't ...know that Congenital Heart Defects are the most common defects in the U.S., 1 in 100 babies are born with it. Approximately 40,000 babies are born in the U.S. with a CHD each year. Or that CHD's are the leading cause of infant deaths in the United States. Also, Congenital Heart Defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.

One of my many jobs as a heart mom is to share the information about CHDs. The more awareness there is, the more fundraising and funding there is. And the more funding, the more research there is to make better medicines with less side effects, more research to make surgeries less risky and hopefully find a cure and prevention one day.

Our Benny is a tough fighter and will continue to fight. Benny is why we raise awareness.  Join Benny in his fight against Heart Disease and Stroke at this year’s Heart Walk. Register Here

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Jocelyn Gomez

August 7th, 2015 was the start of the most life-changing event of our lives. My father, mother, and I were sitting in the emergency room that night waiting to be called on. As the minutes went by a tragedy was about to occur without even knowing. My father was at the emergency room for the pain he had on his left foot. His pinky was swelled up, bruised, and a very bright red mark was on the top part of his foot. 

That night my father found out he was diabetic when his blood sugar level was at 750. My father was already a survivor of three heart attacks and the news of him being diabetic was just another thing to add to the plate. Unfortunately, my father has a rare condition where he creates blood clots very easily. This became a massive problem to his foot. The pain was due to the lack of blood circulation and the different techniques that the doctor’s applied were just not enough. After the unsuccessful peripheral bypass surgery, there was no other option than to have an amputation below the knee.

Recovery is and will always be difficult because it is not only a physical recovery, but a mental recovery as well. His loving family and friends always surround him, which is a huge support. Today, my father is slowly adapting to his new lifestyle with a very optimistic attitude. Being diabetic has given him a different view to life and is thankful that he is still alive to tell his story.

My experience at the American Heart Association as an advocacy volunteer has been one of a kind. I’ve learned remarkable things and became part of a community that works very hard to prevent serious health conditions such as diabetes. Working on the SSB campaign has helped me gain more understanding on how much sugar we are consuming without even knowing. Avoiding sugar sweetened beverages and learning how to prevent health conditions such as heart disease and diabetes is extremely important. My father did not care much about his health until his unfortunate amputation. After this life experience, my interest in working in the public health arena has skyrocketed. Educating my own family on healthier choices to prevent any further health conditions is just the beginning. It is never too late to live a healthy lifestyle!

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Henry Philofsky, Preventing Tobacco Addiction Foundation - Partners with Heart

Henry Philofsky is the Western Regional Director at the Preventing Tobacco Addiction Foundation. Henry and the Preventing Tobacco Addiction Foundation are important and dedicated partners of the AHA’s on our Tobacco 21 for Oregon campaign. We wanted to share his story with you and a little bit more about the important work we are doing together.

What campaign do you partner with the AHA on?

I work with AHA on raising the age at which people can buy tobacco products to 21. The Tobacco 21 campaign is currently developing in many cities, counties and towns, and more are exploring it every day. We are gaining momentum, and with continued effort by the many organizations working on this issue, hopefully someday America will have Tobacco 21 nationwide.

Why is this particular issue important to you?

I work on tobacco issues for a few reasons. It’s the number one cause of preventable death in America, which leads to tragedy for many families, but also costs billions of dollars to the healthcare system that could be going to treat other unavoidable diseases.  Additionally, there is an entire industry committed to selling tobacco to anyone and everyone they possibly can with a history of targeting children. This seems so perverse and unjust that I feel the need to try and help in some way.

Why do you advocate alongside the American Heart Association?

Working with AHA is a blessing. It is a fantastic association staffed with great advocates and staff. I also very much appreciate the mission of the organization and the steps that AHA takes to carry out that mission. Working with AHA on their Advocacy Day in Salem, Oregon was really cool to see. Everyone was very informed, committed and persuasive when speaking to legislators, and it was great to see such an organized and concerted effort in support of AHA’s mission.

Describe a challenge you’ve faced—and why you haven’t given up: 

The biggest challenge for me in doing tobacco work is that much of the public and way too many elected officials no longer think that tobacco is a problem in America. I am regularly told “we solved that problem” which couldn’t be further from the truth. The tobacco control effort in America has made great strides due to the efforts of many advocates and organizations, but tobacco is still the leading cause in preventable death in America and more work is needed.

Would you recommend to someone else that they get involved? Who? Why? How?

I think anyone who cares about their own health or that of their family should get involved in advocacy and AHA is a great place to do it. Even for people who don’t smoke, tobacco still affects them either through second or third hand smoke, sick family members or other economic interests that are negatively affected by tobacco. AHA provides a fantastic service to the public in that they coordinate public involvement in the political process, allowing those with similar views to have a more sizeable impact on public policy than they might have individually.

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Advocate Spotlight: Lyzeth Mondragon

What brought you to be an advocate for the American Heart Association?

I was brought to the American Heart Association's website because my grandmother had just passed away. Both my grandmother and grandfather had suffered strokes so I felt a need to learn more about this topic. As I read about strokes and how I was at a higher risk because of my family history I knew that I wanted to do something to raise awareness. I ended up applying for a job with the American Heart Association and for the past 4 years have had the great opportunities to raise awareness and make an impact not only within my own family but also within communities throughout the Chicago area.

What issues or policies are you most passionate about and why?

I’m passionate about educating young adults on leading a healthier lifestyle because it is the choices we make now that will have a tremendous impact and allow us to live a long healthy life.

What is your favorite advocacy memory or experience so far and what made it great?

My favorite advocacy experiences so far was being able to meet with my alderman and speak with her about the issues that are important to me. I was able to discuss ways that we could engage the community and bring American Heart Association resources to our community.

What is your favorite way to be active? 

Walking in my neighborhood park

What is your favorite fruit or vegetable?

Mangos

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