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Advocate Spotlight: Cassandra Welch

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

I wanted to get involved with American Heart Association, because I have hypertension and members of my family have heart disease.

 

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

Hypertension, Stroke and Cardiac Arrhythmia

 

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

Working the American Heart Association advocacy booth and passing out information on the importance of daily physical education in schools at several events.

 

What is your favorite way to be active? 

Providing information about how members of my family have dealt with hypertension, strokes, atrial fibrillations, and encouraging children & adults to increase their exercise time.

 

What is your favorite fruit or vegetable? 

Spinach

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Ready, Get Set, Get Fit: #GoRedGetFit Launches its 3rd Quarter Challenge!

#GoRedGetFit is a Facebook fitness challenge and platform that provides women with the education, support, motivation and accountability to create optimal results in living a healthy lifestyle. Each challenge includes a physical activity and nutrition component.

The new challenge “Less Salt, More Sweat” consists of limiting your sodium intake to 1,500 mg or less a day and getting 150 minutes of physical activity a week (or 30 minutes, 5 days a week). The challenges are designed and led by the expertise of (4) volunteer celebrity trainers and wellness experts. #GoRedGetFit is a Go Red for Women initiative nationally sponsored by Macy’s.

This group might just be what you need to have a breakthrough in living a healthier lifestyle but don’t just take our word for it. Check out the group and see what some of the members have to say.

“While I haven’t suffered from heart disease, stroke or any of the major risk factors, each and every personal story shared in the Go Red Get Fit Facebook group has inspired me to start working out, eat healthier and stay consistent in my journey toward achieving a healthy weight. I now make my health and my “self” a priority as diseases can afflict anyone at any time,” says Teresa Coulter, Go Red Get Fit Facebook group member. “This group has prevented this woman from having health complications in the future. So from the bottom of my healthy heart, thank you for the daily awareness, support and motivation I’ve never been able to find.”

We invite you to join today because your health can’t wait. Are you up for the challenge? Get more details here.

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We Have a Winner!

In the month of August, we held the very first You're the Cure T-Shirt Design Contest! The top four designs were posted on our Facebook page for a week, whoever's design had the most "Likes" by the end of the week won! After a nail-biting finish (it was so close!), the winning design came from Jenny Ensslin of Wisconsin!

Are you interested in getting a shirt? All you have to do is volunteer! Contact your local Grassroots Director for volunteer opportunities in your state.

  • North Dakota, South Dakota, Nebraska: Pamela Miller - pamela.miller@heart.org
  • Minnesota, Illinois: Anne Simaytis - anne.simaytis@heart.org
    • Click HERE to volunteer for Heart Walks around Illinois!
  • Wisconsin, Michigan, Indiana: Jason Harder - jason.harder@heart.org
  • Iowa, Kansas, Missouri: Christy Dreiling - christy.dreiling@heart.org

Thank you to all of the participants who submitted their designs!

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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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Advocacy Volunteers Needed for Upcoming Illinois Heart Walks

Advocacy Volunteers Needed for Upcoming Illinois Heart Walks


The Advocacy Department is looking for 2-3 volunteers for each of the upcoming Illinois Heart Walks. Be our hero by taking action in your community AND earn points which will allow you to move up in the You’re the Cure ranks! We will need help throughout the day collecting petition cards and recruiting new advocates for the You’re the Cure network. All volunteers will receive a You’re the Cure t-shirt.

If you are interested in volunteering for one of the Heart Walks listed below, please email Rae O’Neill at rae.oneill@heart.org with your first & last name, cell phone number and t-shirt size. Please make sure to include the event title in your email.  

Saturday, September 24th, 2016
Vernon Hills Heart Walk 2016

CDW Vernon Hills Campus, Vernon Hills, IL
Volunteers needed from 7:45 a.m. to 11:00 a.m.  

Sunday, September 25th, 2016
Palos Hills Heart Walk 2016

Moraine Valley Community College, Palos Hills, IL
Volunteers needed from 7:45 a.m. to 11:00 a.m.  

Sunday, September 25th, 2016
Peoria Heart Walk 2016

The Shoppes at Grand Prairie, Peoria, IL
Volunteers needed from 2:00 p.m. to 5:00 p.m.

Friday, September 30th, 2016
Downtown Chicago Heart Walk 2016

Downtown Chicago at Soldier Field South Lot
Volunteers needed from 11:00 a.m. to 1:00 p.m.  

Saturday, October 1st, 2016
Oak Brook Heart Walk 2016

Advocate Kensington Support Center, Oak Brook, IL
Volunteers needed from 7:45 a.m. to 11:00 a.m.

Saturday, October 1st, 2016
Southern Illinois Heart Walk 2016

John A. Logan College, Carterville, IL
Volunteers needed from 7:45 a.m. to 11:00 a.m.

Sunday, October 2nd, 2016
Bloomington Heart Walk 2016

Hancock Stadium – ISU, Normal, IL
Volunteers needed from 2:00 p.m. to 5:00 p.m.

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Advocate Spotlight: PJ Jones

What is your why?

Education

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

I am currently a member of The Multiculture Committee and I wanted to branch out with AHA and see what other volunteer opportunities were out there. So here I am and it is very educational as far as getting your voice heard in other ways. I am really enjoying it.

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

My passion lies with the young people. Getting them educated through the AHA on : Eating right-bringing them supplies needed to grow their own vegetables and fruits. Exercise-staying active. Just maintaining a healthy body, because they are our future and they are the ones that will take care of us someday.

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

My first meeting downtown at AHA learning how to take an idea and turn it into a bill. IT WAS AWESOME!! I would encourage all advocacy volunteers to attend a Summit!

What is your favorite way to be active?

Walking in the AHA Heart Walk...

What is your favorite fruit or vegetable?

ALL FRUITS and greens-all of them.

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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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August Recess

Participate in your local August Recess!

We are looking for volunteers to take a meeting with their member of Congress while they are back in their district offices this August.

Important federal advocacy goals for Congress this year include:

  • CR (Cardiac Rehab) – changing a key Medicare provision so that those who have survived a coronary event can have easier access to rehabilitation programs
  • FA (FAST Act) – helping connect more stroke patients to life-saving telemedicine services
  • CNR (Childhood Nutrition Reauthorization) – protecting strong school nutrition standards
  • NIH (National Institutes of Health) – increasing federal research funding

This is an important opportunity for us to get heart and stroke issues in front of our federal elected officials. If you can help us out, please contact Rae O'Neill at rae.oneill@heart.org or 312-476-6689 as soon as possible.

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Advocate Spotlight: Dr. Karen Larimer

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

My focused, unrelenting desire to see the "healthy choice as the default choice". I strongly believe that evidence-based public policy makes the biggest difference in health.

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

Clean air. Improving the lived environment so that we live in a community where we eliminate tobacco consumption and vaping in ANY place outside the private home.

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

Speaking at the Chicago City Council for expansion of the Clean Air Act in Chicago. I really felt I was contributing to our great American process of Democracy!

What is your favorite way to be active?

Tennis and Sailing.

What is your favorite fruit or vegetable?

No contest....avocado....wait, brussel sprouts...or cauliflower? Too many to choose!!

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Advocate Spotlight: Rae O'Neill

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

My grandfather died of a heart attack when I was five years old. Several years later my mother started working for the American Heart Association. I’ve been volunteering for American Heart Association for as long as I can remember. As a political science major, when my mother told me about the available position in advocacy I jumped at the opportunity. My boss, Mark Peysakhovich, hired me July 14th, 2014 and the rest is history! I can't imagine working anywhere else, the lifesaving work our staff and volunteers do every day is so close to my heart.

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

I’m most passionate about raising the tobacco purchasing age to 21 years old. This seems like a no brainer to me, because studies have shown almost 90% of smokers began smoking before the age of 19. If we want to lower the number of lifelong smokers, this is the age group we need to target. By raising the legal purchase age to 21, the Institute of Medicine predicts a 25% percent decrease in smoking prevalence by the time today’s 15-17 year-olds become adults. At this time I would like to shamelessly plug our latest Tobacco 21 action alert, if you haven't taken action on this issue yet there's still time! Please ask your state Representative to support Tobacco 21 legislation in Illinois.

My friends will tell you that I’m also really passionate about lowering the consumption of sugary sweetened beverages. “Do you know how much sugar is in that drink?” is my catchphrase. Hopefully my relentless reminders will help my loved ones make healthy choices that reduce their risk for cardiovascular disease and stroke.

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

This is an easy one, my favorite advocacy experience was by far the Illinois State University Day at the Capitol. We bussed in 50 exercise science and kinesiology students, provided an advocacy training, then let them loose at the Statehouse where they told their legislators why we needed to keep the daily physical education requirement in Illinois schools. Not only did a lot of the students stay engaged as volunteers long after the event, but I think the event helped protect the P.E. requirement during a time when it was under fire.

What is your favorite way to be active?

Walking my dog

What is your favorite fruit or vegetable?

Tomatoes

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