Posts Tagged ‘Share Your Story’

Texas Youth Advocates Take on State Capitol

Thursday, March 31st, 2011

Twenty-eight students from all over Texas helped the American Heart Association advance its mission by supporting key legislative issues at the state Capitol on March 16. The youth-advocates began the day with “telling your story” training and an interactive role-playing exercise to prepare them for their meetings with lawmakers on issues including Smoke-Free Texas and trans fats in schools.

Following lunch with State Rep. Mark Strama and a performance by the Murchison Elementary “Hot Shots” Jump Rope For Heart team, the youth-advocates took to the halls of the capitol. They visited over 60 offices, including meetings with Rep. Myra Crownover, who authored of the Smoke-Free Texas bill and Rep. Diane Patrick, who authored a bill to limit trans fats.

It was a highly successful day for the AHA and our mission,” said Grassroots Coordinator Brian Bowser. “I believe it helped Smoke-Free Texas retain some of the momentum it accumulated earlier this month and gave a good spark to the trans fats bill that was just introduced. In addition it provided a great learning experience for the youth involved and gave many of them their first taste of civic involvement.”

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We Want to Hear Your Story!

Wednesday, September 1st, 2010

With implementation of the new health care law underway, making health care coverage more accessible and affordable to millions of Americans, we want to hear your health care story!
By sharing your personal story about the new health care reforms that have benefitted you or your family, you can help educate your fellow heart disease and stroke patients about the new coverage options and protections that may be available to them as well.

  • Do you have a child with a pre-existing condition who is now eligible for coverage?
  • Have you encountered problems with lifetime caps in the past- which are now prohibited?
  • Are you a young adult (under 26 years old) who can now stay covered under your parent’s plan?
  • Have you put off preventive care in the past because you couldn’t afford it?
  • Are you or someone you know enrolled in the new Pre-Existing Condition Insurance Plan?
  • Are you a senior who has recently received a rebate check to make it easier to purchase prescription drugs?
  • Have you had your insurance policy cancelled after you got sick, which is now prohibited?

If you fit any of the profiles above, let us know! Your story won’t be used without your consent, but as opportunities to share patient stories come up, whether it is on the web, through the media, or at events, we’ll be able to reach out to you to discuss your interest in helping further.

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Joshua’s Story

Friday, January 22nd, 2010

Joshua Lemacks was born with a severe heart defect that required complex surgery as soon as he was born. Mark and Jodi Lemacks chose the doctors that would give their son the best chance of survival. Even though the insurance company approved the out-of-network care, the Lamacks family ended up $85,000 in debt.

The Lemacks family shared their story with the Washington Post. Read it here.

“This is what health-care reform should be about. It should be about allowing people like Joshua to live and have a happy, healthy life,” says Jodi in the article.

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Michelle Ballasiotes’ Lobby Day story

Wednesday, April 29th, 2009

From Michelle Ballasiotes, Pediatric Stroke Survivor and Youth Advocate of the Year, 2009:

This is my third year going to Washington DC for Lobby Day and it just keeps getting better and better. There is nothing like seeing your friends from the past years! We got there on Sunday and stepping off the elevator to go to dinner I ran into so many familiar faces: Joe Goldzweig (my favorite funny friend from Illinois), Sarah Anne Voyles (Youth Advocate of the Year for 2007), Sarah Exley (mom of a pediatric stroke survivor from Wisconsin) and others! I went to Lobby Day this year with Amber Boatright and her mom, Brenda Boss. Amber is a stroke survivor too. She had her stroke 3 days before her senior year in high school. We went down to the hotel lobby to meet 2 more mothers of young stroke survivors, Jessica Spear and Erin Grady. Our now very large group all went to dinner together. We got to talk about why we were at Lobby Day and some of the moms asked me questions about their kids, because their kids are all younger than I am. It was a great feeling to know that I was helping someone.

Monday was meeting day. I went to “Your Voice in the Media” and the speaker, Sarah Exley was amazing, as always. I got to help greet people at the door for the Survivor’s Luncheon which was fun. I liked hearing the speakers: Sarah Exley again and a 10 year-old boy who had been through many heart surgeries. His speech was good because he feels just like I do. He wants to be treated like a normal kid. Next, I was at the Youth Advocate Training and we got lots of good instruction for Capitol Hill. The best part was it was fun. I give two thumbs up to Sarah Anne Voyles and Lee Storrow for leading the group.

After the youth training, we went to “Hook, Line and Sinker” training. Jessica Spear (this is her first Lobby Day and she is very passionate) went up on stage for a pop quiz on what to do at the Congressional meetings. She did great. I thought the meeting was helpful for what exactly to say on the Hill. We got to break out into our State meetings and go over who goes where and at what time. We also role played a practice meeting. Everyone was crammed full of information after all of the day’s meetings!

Tuesday morning finally came. I had a yummy breakfast before I had to go up on stage to get my Youth Advocate of the Year award. I was very nervous at the last second, but my mom said I did fantastic. She is usually honest with me, so I believed her. Very quickly after the breakfast, we had our first meeting on the Hill. It is so enjoyable for me to tell my story, listen to others and amaze the Congressmen with all of the Youth Survivors from Georgia this year. I think we got most of them to do the very important asks. I went to 5 meetings, sometimes the member was there and sometimes we met with their aide. I liked meeting with all of them because I feel like they were listening to us.

Going to Lobby Day is so exciting, emotional and powerful all at once. I feel like I belong and that everyone understands my situation, even though I am a lot younger than most everyone else. I would love to do this forever and ever because I know that together, we can make a difference!

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Thanks for a Great 2009 You’re the Cure on the Hill!

Friday, April 24th, 2009

It was another banner year for You’re the Cure advocates who came together in Washington, D.C. advocating for increased funding for heart disease and stroke research and prevention efforts as well as asking for meaningful healthcare reform. Approximately 450 advocates representing all 50 states were able to meet with lawmakers and share their stories as survivors, caregivers, professionals, and researchers. In fact, advocates took part in 354 meetings on the Hill and they dropped of materials to additional offices too.

By now you have made the trip home and have recouped after your hard work. Results are just starting to come in: so far Congress has received more than 10,200 messages from You’re the Cure advocates about this year’s top issues. Members are adding their support to the funding letter to the President and signing on as co-sponsors of bills addressing heart and stroke issues. Watch for updates on your efforts in the e-newsletter and from your local advocacy staff.

Let’s keep the pressure up and secure even more heart and stroke champions on Capitol Hill. Don’t forget to contact the offices you met with and ask for their support. Spread the word and ask friends and family to visit http://www.yourethecure.org/ to take action. And work with your AHA/ASA staff partners to share your experience with the media. There has already been some great coverage across the country, and the media is a great way to keep our issues in the spotlight.

Congratulations and thank you for all you do as a You’re the Cure advocate. As you take some time to reflect on your experience in the nation’s Capitol- the meetings you had, the new friends you made, and the training you received- don’t forget to share your thoughts on the blog. We’d love to hear about your personal experience. Leave a comment below or email your own post for this blog directly to yourethecure.americanheart@blogspot.com.

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The First Day is Done

Monday, April 20th, 2009

We’ve finished our first day at the Federal Lobbying event. What a whirlwind time, full of educational sessions and socializing with advocates from all 50 states!

Tomorrow should be a success with the enthusiastic group of people, young, middle aged and older. Can’t wait to see how it all turns out!

Many thanks to the American Heart/American Stroke Association for all their hard work.

Ann Moser, Carlisle, PA

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First Lobby Day

Monday, April 20th, 2009

This is my first visit to Lobby Day and I hope it won’t be my last. All of the new information that I have heard has been astounding. The people that I have encountered have been miracles. It is so interesting to hear from all of the survivors. It was so much fun meeting advocats, like myself, from my own state. I look forward to our visit to Capitol Hill on Tuesday. Wear Red FOr Women!!!!
Kimberly Fox

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First time @ Lobby Day!

Monday, April 20th, 2009

This is my first time at Lobby Day and I’m so very excited and honored to be involved in a movement that can and will change lives with all of our help. I am a two heart attack survivor and proud of it. I’m here because I wanted to add my voice to the millions of other voices out there that fit my category. I’m in the group of people who suffer heart attacks but don’t fit the criteria for the risk factors. On lobby day I intend to push for funding for more genetic research. To all who have made this a memorable experience for me God Bless and keep up the good work. HAPPY LOBBY DAY!!!

Tracye Isaac

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Lobby Day Update

Monday, April 20th, 2009

Just finished the Social Media Workshop & met really great people @ the Survivor’s Luncheon!
Sent from my Verizon Wireless BlackBerry

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Survivor Luncheon

Monday, April 20th, 2009

It was twelve years ago that I had my first of three strokes at age 21! I am here today to share my story of survival and meet with other advocates and legislators who have come to DC for the American Heart and Stroke Association! This is my ninth year attending You’re the Cure on the Hill, and I am annually surprised and excited by the energy and passion of all the people here. My favorite event is the Survivor Luncheon that will take place today. It started as an event with 50 folks, and now hosts about 200 survivors and caregivers. It gives us all a chance to meet one another and compare notes on our experiences. The luncheon also gives us ideas to bring back to our communities as so many advocates do awesome activities in their own location. What an amazing day to understand that all of us are here today! I am a proud stroke survivor, advocate and mom! Thank goodness I am here :)

Lisa Deck
North Attleboro, MA
Stroke Survivor and Advocate

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