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How fate brought together three stroke survivors' families

The following article about You're the Cure advocate Ryley Williams and two other youths who survived strokes on the same day was published by AHA CEO Nancy Brown in the Huffington Post on July 6th, 2016. A link is provided at the end of the story.

In the community of Dartmouth in the Canadian province Nova Scotia, Nik Latter’s family is throwing what his mom promises will be “a big ol’ party.” Fist bumps and hugs will celebrate the fact he’s made it an entire year since his devastating July 8th.

One by one, over each of the last three July 8s, Ryley, Amber and Nik suffered a stroke. Yet the oddity of their shared date is only part of what led their moms to create a de facto support group.

What really brought them together is that Ryley, Amber and Nik were — and still are — teenagers.

Ryley was 15 and devoted to becoming the starting nose guard on his varsity football team. Amber was 13 and loved playing softball and hanging out with the two girls who’d been her best friends since kindergarten. Nik was a few days shy of 18 and had left school to work at a restaurant; he’d bought a car and aimed to become a voluntary firefighter following that upcoming birthday.

Now, well, their dreams are different.

As we approach July 8, the families allowed me to share their stories to send an important message: Stroke can attack anyone at any time.

***

Ryley Williams went into the summer following his freshman year at Bentonville (Arkansas) High with one goal. He wanted to draw the attention of the varsity football coaches.

So he ran and lifted weights. He ate six meals a day, devouring only foods that would expand his 6-foot, 242-pound frame the right way.

“Honey, you’re never late, you make good grades, you don’t cause any problems — trust me, the coaches notice you,” his mom, Terri Rose, told him. “They just won’t tell you they notice you.”

The morning of Monday, July 8, 2013, Ryley went to an indoor field for football practice. He was stretching when he grabbed his leg and collapsed. Everyone thought he’d pulled a muscle and overreacted. Then they realized there was more to it.

At the hospital, a brain scan showed a bigger problem than the facility could handle. He was flown by helicopter to Arkansas Children’s Hospital in Little Rock. It wasn’t easy fitting someone his size into the chopper.

When they landed, seizures began. Off he went for an MRI. Looking at the results, the doctor pointed to five spots.

“This is a stroke, this is a stroke, this is a stroke, this is a stroke and this is a stroke,” the doctor said. “We need to find out why he has so many blood clots in his brain.”

Around 3 a.m. Wednesday, they still didn’t know why. And now they had a new problem. Ryley’s brain was swelling.

He underwent an operation to remove part of his skull. With Ryley sedated, doctors also took a closer look at his heart. They found hair-like strands of a bacterial infection on the outside of two valves. A-ha! This was the source.

Next question: How much brain damage had he suffered? His right side didn’t function. Doctors cautioned he may never walk or talk.

As Ryley was coming out of his medically induced coma, some football players visited. Coaches, too. They brought a varsity jersey with his number, 99.

“The head coach drove down to Little Rock and stayed with us when Ryley had the skull surgery,” Terri said. “Other coaches came to visit, too. They told us they were watching him. They knew he was going to have a big year. Hearing that was bittersweet.”

Fast forward to today.

His right arm remains compromised. He also battles aphasia, a condition that sometimes makes it hard for him to get words out. Still, Ryley recently graduated high school, right on time. He even spent the last year working at a Walmart Neighborhood Market. And he’s become an advocate for the American Stroke Association. Last year, he and Terri encouraged a Congressional subcommittee in Washington, D.C., to support more funding for research and awareness about pediatric stroke.

He’s spending this summer at a facility that specializes in neuropsychology recovery for victims of strokes and traumatic brain injuries. He’s learning skills to live on his own, although he plans to spend two years at home while attending Northwest Arkansas Community College.

“He’s incredibly positive,” Terri said. “He’s accepted everything. He tells you, `This is who I am now.’”

***

The night of July 8, 2014, Amber Hebert was on first base when the next batter hit the ball to the outfield.

Amber ran to second base without anyone trying to get her out, then fell as if she’d been punched. She vomited and went into a seizure. Her 5-foot-3, 86-pound body thrashed so violently that four firefighters held her down while a fifth injected her with medicine.

The local hospital in Bellevue, Nebraska, ended up sending her to Children’s Hospital & Medical Center in Omaha. The seizures continued until 3 a.m.

“When she finally stopped seizing, she was able to see and talk and understand you,” said her mom, Tirzah Hebert. “But I could see the fear in her eyes.”

Tests — and seizures — continued throughout the next day. Finally, doctors declared she’d suffered a stroke.

The next day, Amber sat in a chair holding a cup and walked around her hospital floor. The following day, she had a bit more difficulty holding a cup but could still walk. That night, Tirzah asked if she understood what had happened.

“I don’t know,” Amber said.

The next day, a Saturday, Amber couldn’t walk, talk or hold up her head. This continued until Tuesday, when she finally underwent an MRI. It showed that her brain was swelling.

Doctors were able to reduce it with medicine. Then came the waiting game to determine the extent of brain damage. Soon, she began smiling and communicating with her left hand — fist for yes, open palm for no.

These days, Amber walks, but sometimes the toes on her right foot curl, causing her to drag her foot.

She can’t move her right hand or wrist. She also has aphasia. Therapists believe that with practice she’ll improve in every area. (Doctors never determined the cause of her stroke.)

Alas, there have been other obstacles.

Shortly after Amber made it home, her dad’s dad — with whom she was very close — died of cancer. Four months later, a lump in her dad’s neck was found to be cancerous. Early detection plus chemotherapy and radiation helped him beat it.

School proved no refuge. She went from being one of the most popular girls at school to getting bullied. Her two lifelong best friends “just disappeared,” Tirzah said. Amber switched to homeschooling until giving the classroom another try this summer.

“She’s a happy girl, for the most part, very loving and caring,” Tirzah said. “She still has some depression, but who wouldn’t? To have your life completely turned upside down like hers has?”

***

Even as a child, Nik Latter struggled with migraines. So, last June, when he had one that was bad enough to go to a hospital, nobody thought much of it.

Nor did anyone think twice when he left work complaining of a migraine on Sunday, July 5, 2015.

The next day, he endured what he described as the worst migraine he’d ever experienced. He wore sunglasses indoors and had his mom, Rhonda, drive him to a clinic. The next day, he slept at his grandparents’ house because it was quieter than being home with his two younger sisters.

Rhonda visited him Wednesday, he stared blankly. He tried talking, but nothing came out.

“He’s having a stroke,” she declared. “Call 911!”

A scan showed a mass on the right side of his brain. During an operation, doctors determined it was a stroke. Days later, it was determined the cause was a sinus infection gone severely wrong. The infection broke the barrier between the sinus and the brain, releasing a blood clot.

Nik’s recovery started great. He gave hugs, pulled his mom’s hair and played thumb wars with his sisters. Then, in the early hours of July 16, he had another stroke. On the other side of his brain.

Doctors said Nik may not survive. But the family wanted to give him every chance. Their faith was rewarded when he was weaned off the breathing tube.

He continued clearing hurdles, although he remained hospitalized until March. The long struggle seemed to deflate him; being home reinvigorated him. He now puts his right foot down and pushes his wheelchair. He fist bumps with his right hand, laughs, smiles and kicks.

He makes sounds and, sometimes, says words. Not enough to say he’s talking. But he’s trying.

“He’s very aware of his surroundings,” Rhonda said.

***

While each stroke story is different, every stroke shares similarities.

Time lost is brain lost. The sooner the stroke can be recognized, the sooner treatment can begin. The gold standard of treatment is called tPA. If this clot-busting drug is administered within three hours, and up to 4.5 hours in some cases, the extent of recovery can improve drastically.

That’s why the American Stroke Association urges everyone to remember the acronym FAST. When you see Face drooping, Arm weakness or Speech difficulty, it’s Time to call 911.

Stroke is the No. 2 killer worldwide and No. 5 in the United States. While it’s true that strokes usually happen to older people is true, Ryley, Amber and Nik are proof that’s not always the case.

The world of pediatric stroke is small enough — and the pull of the internet is strong enough — that families of survivors are bound to find each other.

For instance, Terri connected with Lea Chaulk, a Canadian mom whose son was about the same age as Ryley and had a stroke about the same time. Terri and Lea became like sisters as they helped their sons grieve over the lives they lost and learn to embrace their new reality. Lea later introduced Terri to Rhonda.

Meanwhile, Ryley got to know four teenagers from the Kansas City area who were featured by American Heart Association News after they overcame strokes during high school to graduate on time. One of those families had gotten to know the Heberts, and they connected Terri and Tirzah.

The three moms — Terri, Tirzah and Rhonda — lean on each other often. They’ve yet to meet in person, although Ryley and Amber have shared messages via Facebook.

“Knowing that I’m not alone has helped soooo much,” Tirzah said.

“If I didn’t have some of these moms, I think I’d go insane,” said Rhonda, laughing. “Sometimes I sit down and get lost in thought and get upset. Then I’ll send one of them a message saying `I need you to bring me back down to Earth.’”

Three families irrevocably altered, all on a July 8. It’s incredible. Yet from this coincidence comes strength.

“I’ve told my family, `Look, it happened to two other kids on the same day,’” Tirzah said. “It’s like, Wow. And we’ve all made it this far. And you know what? We’re going to keep on going.”

Read the rest of the story on the Huffington Post.

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Information: The Most Valuable Player

Fall is the perfect time of year to learn more about your elected officials.  November 8, election day will help shape the course for our communities, state and nation for the next several years.  We encourage everyone to vote. 

We are often asked about learning more about elected officials and candidates. 

Some of our tips are:

· Google Search – take 10 minutes and simply "google" your elected official or candidate. 

· For current state lawmakers visit the NC General Assembly website. There you can learn what committees your lawmaker serves on, bills they have sponsored and how they have voted.

· For current local officials, you can normally find information on your local government webpage.

· Today most all candidates and lawmakers have their own webpages that tell about them.

· The State Board of Elections website also has information on candidates. 

You may also consider attending local candidate forums.  Normally you can find this information advertised in local papers, local access news stations and by hosting organizations. 

Getting to know the candidates and your elected officials is an important step to being a skillful and effective advocate.  That knowledge helps you gain greater understanding and will result in improving your ability to build a stronger relationship with them.  We challenge you to take ten – take ten minutes and "google" a candidate – see what you can learn.    

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Neha Aggarwal

Neha Aggarwal, Mid-Atlantic Affiliate

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 many 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. 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, “Saving and improving lives is why.”

 

 

  

 

 

 

 

 

 

 

 

 

 

(l-r) Neha, and her sister, mother, and grandfather

 

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Find the Heart Walk Near You

The Heart Walk is the American Heart Association’s premier community event, helping to save lives from heart disease and stroke. More than 300 walks across America raise funds to support valuable health research, education and advocacy programs of the American Heart Association in every state. Our You’re the Cure advocacy movement – and our public policy successes along the way – are all made possible by the funds raised by the Heart Walk. Whether it’s CPR laws passed to train the next generation of lifesavers or policy to regulate tobacco products and prevent youth smoking,  together we are building a world free of cardiovascular diseases and stroke. The Heart Walk is truly a community event, celebrating survivors, living healthy, and being physically active. We hope you’ll join us and visit the site today. If there is not a walk listed in your area soon,  it may be coming in the spring season or you can join a virtual event. And don’t forget to connect with your local advocacy staff and ask about your local Heart Walk day-of You’re the Cure plans - they may need your help spreading the word. Thanks for all you do, and happy Heart Walk season.

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In-District Meetings - the Golden Window?

Could timing be everything when you want to get your legislator’s attention?  When lawmakers are ‘in Session’ they are flooded with constituent requests about current legislation.  This is when they are on active duty in their General Assemblies or other governing body.  While these advocate efforts can be very effective, it’s often tough for your representatives to really focus and consider your concerns during these timeframes.

If you have the luxury of advance preparation, the golden window to really get top billing in their brains is when they are off Session, or in recess.  That’s when they often return to their District offices, and may have more time to slow down and digest your message.  They are generally more available to the local community, and usually invested in connecting with their constituents. 

It’s an ideal time to introduce new issues, and lay the groundwork for solidifying the deal in the future.

To take advantage of these opportunities, you can watch your state’s calendar on their legislative website, and call ahead to see about booking time for a short chat.  The federal legislature has a standing annual August Recess that presents important opportunities to discuss federal bills, as well. 

This can also be a great time to simply introduce yourself to your representatives, or further a relationship that you’ve already established.  Building those connections when your representatives are not pulled in so many different directions is a smart strategic move, and positions you well for a better reception when there is an active bill you want to promote.  You’ll stand out from the masses who bombard them during Session, and that gives you power as an advocate.

Want to get in on the action for August Recess?  Every year, You’re the Cure advocates visit the District Offices of their congressional representatives when they are home for their break.  Our National team picks a federal issue that needs an extra push, and prepares all the materials needed.  Advocates can either drop off materials, or book a short meeting. 

GET ON THE AUGUST RECESS LIST:

As always, do let us know when you’ve reached out to your legislators about any You’re the Cure issues. 

Thank you for your efforts!

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Neil Dorsey

NEIL DORSEY, MID-ATLANTIC AFFILIATE

Why am I an advocate?  What got me started down this path?  I have always felt the need to speak up about issues that impact on our lives.  I once heard at a meeting that we advocate for those folks who cannot speak or do not have a voice in decisions being made about their lives.  This hits it on the head, the reason I advocate. 

When I see community members who are uneducated or misinformed about the health of our community I see red.  I want to be part of educating our community to make it a healthier place to live. To be able to present a logical, well thought out position to counter the lack of knowledge, or the distorted view presented is a great feeling.  It fuels my passion for advocacy. 

Over the years I have developed a better understanding of advocacy and its importance in the lives of our community.  I cannot sit by and not challenge the falsehoods presented to the public by folks with no real interest in the health of our community.  The facts are there, and we must make the public understand that a sick community is bad for everyone. 

As an advocate we must stand up to the big dollars of business and those who influence our elected leaders.  We elect everyone, and when we advocate, we educate the leadership by our voices and vote.  Advocacy at the grassroots level is where the action is, and boy do I enjoy the game at this level, even when the odds are against us. The only way we can win is by being passionate in playing the game.  Advocacy is the way to play and I play to win!

 

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Help Protect PE for Kids Like Me!

Guest post from Reagan Spomer, 6th grader Alliance for a Healthier Generation Youth Advisory Board Member & You’re the Cure Advocate

I have two words for you… scooter hockey.  Sounds fun, doesn’t it?  That’s because it is!  Scooter hockey, along with cage ball and 3-way soccer are some of my favorite activities in gym class, which I have a few times a week.

I’m glad I have physical education for a number of reasons.  It keeps me active and teaches me to try new things.  It helps me focus on my school work.  It relieves my stress.  And most of all, it makes me feel great! 

But I know a lot of schools don’t have regular PE like my schools does.  That means a lot of kids are missing out on the benefits of being active during the school day.  I think this needs to change.   

Will you help?  As part of the nationwide campaign to protect PE in schools, Voices for Healthy Kids has created a photo petition map to show how many people across the country love PE like I do.  As people share their pictures, the map will change colors.  I’ve added my “I heart PE” photo for South Dakota.  Will you do the same for your state?  It’s really easy:

  1. Print an “I heart PE” sign (or make your own!)
  2. Take a picture of yourself holding the sign.
  3. Click on your state to share your photo.

Thanks for helping to protect PE for kids like me!
-Reagan

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We Met At The Capitol

It has been a busy spring in the Mid-Atlantic Affiliate!  Across the affiliate we have been hosting Lobby Days to bring advocates together to meet with their lawmakers, so join us to learn what your neighbors have been busily working on this session.

South Carolina’s inaugural Lobby Day in March was an overwhelming success!  Advocates spent the day in key meetings with lawmakers, asking for bilateral support around H 3265 - CPR in Schools as well as funding for a position to oversee the state stroke registry.  We are pleased to share that Governor Nikki Haley signed H 3265 into law on April 21, 2016 H 3265.  SC advocates can thank their lawmakers by joining us here!

North Carolina hosted You’re the Cure at the Capitol State Lobby Day in May. What an experience!  Advocates gathered to educate lawmakers about the need for improving access to healthy foods and ask for support of HB 250/SB296: Healthy Food Small Retailer/Corner Store Act.  NC sweet potatoes accompanied by heart healthy recipes were also handed out, and a wheelbarrow filled to the brim with local produce was on display.  Since then, the House included $300,000 in their budget for the initiative and now the budget is headed to the Senate.  NC residents can take action on this issue – just click here.

Virginia held its annual Lobby Day in February, managing meetings with legislators in spite of harsh winter weather.  You're the Cure advocates educated legislators on how the Virginia Grocery Investment Fund would increase access to fresh foods across the state. Advocates followed the effort up later the same week by dropping off a grocery bag of fresh fruit with information about the need to legislators on their way into the Capitol.  Although funding was not ultimately included in the budget, the issue remains, and will be a continued advocacy focus. VA residents can further support this issue now by clicking here to take action.

The District of Columbia held its Lobby Day at City Council in April, bringing advocates together to talk about dealing with DC’s tobacco problems.  In addition to seeking funding for tobacco cessation and prevention programs, You're the Cure advocates asked Councilmembers to remove tobacco from sports venues, raise the minimum age to purchase tobacco to 21, and to treat e-cigarettes the same as other tobacco products in its city code. Although the tobacco funding was not approved, some of the other tobacco issues are still under consideration. Those who live in DC can help push these issues forward by clicking here to take action.  

Maryland’s Lobby Day, focused on including healthy food options in state vending machines, was held in February.  You're the Cure advocates worked hard to educate legislators about providing healthy choices among the other offerings, a measure that would support a healthier population and serve as a good role model for others.  Although the bill was killed in the committee stage, advocates will continue to build support throughout the year, and try again next legislative session. MD residents can speak up for healthy foods by clicking here to take action.

We’d love for you to consider joining us next year at your Lobby Day!  Don’t forget to take action today to tell your lawmakers you support the policies of the AHA.

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Debra Wells

Debra Wells, District of Columbia

Don’t ever let yourself wind up like Debra Wells. Doctors confirm her heart stopped for almost 20 seconds.  Today she’s alive to tell about it, and it was a rough road. 

Before her heart problems, Debra was a successful business woman, working as Vice President of Business Development for a publicly traded company.  She worked hard and played hard.

However, her world changed when she collapsed while on a trip with her husband in Maui. What began as a migraine headache became a stroke.  “In that moment I was completely—and instantly—DEPENDENT,” said Debra.  For two years, she went to physical, speech, and occupational therapy. She was told to “accept her limitations.”  She worked to improve her health and gradually returned to work.

Seven years later, her heart stopped on two more occasions, once it was for 19.5 seconds. As Debra describes it, “For me … it was a head on collision with reality.  No more denial.  In those precious 19 and half seconds that could have taken my life, I realized I could no longer treat my health like a business deal.” Debra has since had two pacemakers implanted. She still has high blood pressure, and does everything she can to control it by exercising regularly, eating healthy, and taking medication. 

Now, over 16 years after having a stroke, Debra is making a difference by sharing her story with others as a You’re the Cure advocate. She has shared her story at the Maryland Million Hearts Symposium, on Washington DC’s CBS TV station WUSA9, in addition to other venues.

Debra urges women to take care of themselves and know their risk factors and the important “numbers”—blood pressure, cholesterol, and BMI. She encourages them to accept and respect themselves as working women, mothers, wives, sisters, and daughters.

Debra says, “I am in a way grateful for the 19.5 seconds that almost took my life, because in turn, it taught me to treasure every second I’ve had since, every relationship, [and every] day in my life.”

Visit the American Heart Association’s website to learn more about simple and important changes you can make to improve your heart health.

Have a story of your own to tell?    Enter it HERE (it’s confidential). 

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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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