You're the Cure on the Hill Advocate Spotlight: Michelle Ballasiotes

As You're the Cure on the Hill 2009 approaches, we continue to profile some of the remarkable advocates who will travel to Washington, D.C. to meet with lawmakers on behalf of heart and stroke patients. Today, meet... Michelle Ballasiotes from Georgia!

Michelle's mother shared her story:
In November 1997, Michelle was born just one day shy of 36 weeks. The pregnancy was uneventful, with a normal amniocentesis at 20 weeks. Then at 29 weeks gestation we received the news that our baby had a brain abnormality. The ventricles in Michelle’s brain were enlarged and the probable diagnosis was hydrocephalus (an abnormal accumulation of cerebrospinal fluid [CSF] in the brain). A wonderful neurosurgeon performed surgery on Michelle when she was 3 days old to place a shunt to allow the CSF to flow normally. He came out with “good” news after the surgery. The cause of Michelle’s hydrocephalus was a one-time “event”, a hemorrhage in her brain. Michelle had suffered a stroke sometime between 20 and 29 weeks gestation, but to this day, we still do not know what caused Michelle to have a hemorrhagic stroke before she was born.

We were one of the fortunate ones to get Michelle’s diagnosis of stroke so early. A lot of babies’ strokes aren’t detected until months or even years after they suffer a stroke, because there is a lack of awareness that 1 in 4,000 babies can suffer strokes. Michelle was able to start treatment very early, while her brain was still forming pathways. Her official medical diagnosis is right hemiplegia, which is a form of cerebral palsy. Hemiplegia is the most common form of cerebral palsy in children born at term, and stroke is the number one cause.

Michelle has been involved with the AHA since early 2006 with a main objective of creating awareness for pediatric stroke. She wants to help other kids who are fellow stroke survivors, as well as get more research so other kids don't have to go through what she has gone through. She has had Botox in her right leg (not for wrinkles though), 2 surgeries, wears an AFO (ankle foot orthotic) on her right leg, has gone to weekly PT and OT since she was 6 months old and will live her entire life as a stroke survivor. She will never regain full use of her right side because a left portion of her brain stopped developing when her stroke occurred. But Michelle is not "disabled" she is "differently-abled" and would like to make sure that kids like her understand that they should never give up hope.

Michelle’s involvement with the American Heart Association has included: attending Lobby Day for the past 2 years; participating in 2 Heart Walks, one in Chicago, IL, one in Augusta, GA; speaker at the Heart Walk kick-off, Chicago, 2006; radio DJ promoting Heart Walk, 2006; speaker at National Survivor Luncheon, 2007; providing help with a Girl Scout Disability Awareness Day (the AHA had a booth); one of the "12 Faces of Cardiovascular Disease"; attending 2 "Strike Out Stroke" days with a semi-pro Chicago baseball team; wrote a story about her life at age 8 and it was featured on the AHA's website; has been featured in numerous newspapers, magazines and online articles about pediatric stroke; is the 2009 Stroke Hero for Augusta, GA; and was just selected as the 2009 National Youth Advocate of the Year.

Stay tuned for more You're the Cure on the Hill advocate profiles next week...

You're the Cure on the Hill Advocate Spotlight: Laine Berry

As You're the Cure on the Hill 2009 approaches, we're introducing you to some of the amazing advocates who will travel from around the country to join us in Washington D.C. April 20 and 21. They'll share their stories with lawmakers as they fight for heart disease and stroke research and prevention funding and healthcare reform. Today, meet... Laine Berry from Arkansas!

In Laine's own words:

Eight years ago, I nearly lost my greatest girlfriend, closest confidant and lifelong mentor to heart disease. My beautiful mother, Cheryl Hatfield, had suffered from strange symptoms which included sleeplessness, migraine headaches, and general malaise for several months. Doctors had considered several possibilities for these symptoms, including depression and anxiety, but no physician ever considered the culprit might be coronary artery disease. We finally convinced our family practitioner to order an arteriogram, and our suspicions were confirmed. It was discovered that my mother had blockages of more than 90% in three main arteries. That same year I was diagnosed with Wolff-Parkinson-White syndrome. I had been suffering from this condition since childhood, but had not been able to gain an accurate diagnosis for nearly 25 years. After my mother's successful triple bypass surgery, and my own diagnosis, it became my goal to learn as much about heart disease in women as possible. What I learned both terrified and inspired me. I have become an activist for the American Heart Association, as a volunteer and spokesperson. Over the last eight years I have served as a board member for our local Heart Walks, as a You're the Cure advocate, as the chairwoman of our Arkansas advocacy committee, as an organizer of some of the earliest Go Red events in our state, and as a spokesperson nationwide. I fully believe the only way to truly end the effects of coronary artery disease in women is to teach them to know their bodies and to be their own advocates.

In 2008 I won the Mrs. International pageant from a field of women from all fifty states and around the globe. The Mrs. International organization has partnered with the American Heart Association, and has made women’s heart disease education their national platform. Since my crowning in July of 2008 I’ve traveled over 25,000 miles speaking on behalf of the AHA. I’m thrilled to complete my journey as Mrs. International as pat of the delegation from Arkansas at national lobby day!

Stay tuned for more You're the Cure on the Hill advocate profiles throughout the month...

President Obama Recognizes Workplace Wellness Week

This past Fall, the American Heart Association supported a House of Representatives resolution designating the first full week of April as National Workplace Wellness Week, when employers across American will invest in the health of their workers. You can read more about Workplace Wellness Week here.

President Obama issued a letter earlier this week recognizing the importance of this week.

President Obama's letter said this: "I send greetings to all who are observing National Workplace Wellness Week, and I join you in recognizing the strength of a healthy America.

The rising cost of health care is one of the most pressing financial challenges for our families and our Nation, and I share the sense of urgency that many Americans are voicing. By working to improve safety and health in the workplace, we can reduce costs, increase productivity, and implement best practices that further citizens' well-being.

During National Workplace Wellness Week, employers will highlight the importance of this issue through smart, preventive health education and programming at the workplace. I commend Representative Stephanie Herseth Sandlin, Representative Charles Boustany, and Senator Tom Harkin for their accomplishments in promoting a healthier and more competitive American workforce.

Together with Congress, I am working to build on these accomplishments. I recently signed into law the American Recovery and Reinvestment Act, which includes $1 billion for prevention and wellness. Investments made now in the health of Americans will contribute to the long-term wellness of our individual citizens, our economy, and our Nation."

This year, the American Heart Association's National Start! Walking Day falls TODAY, right in the middle of Workplace Wellness Week. Be sure to get up and moving for 30 minutes today!

You're the Cure Advocates Speak Out on Healthcare Reform

You’re the Cure advocates are speaking out about the need for healthcare reform. As leaders in Congress focus on fixing the country’s healthcare system, it’s important they hear from heart and stroke advocates who can share real life stories about their own struggles with healthcare coverage and adequate care.

You’re the Cure advocate Karen Merrill in New Hampshire shared her story with the national media and communicated the challenges she experienced with the cost of prescriptions. Read more in this Health Behavioral News article.

Another You're the Cure advocate, Frank Amend, had the opportunity to share his story at a Healthcare Forum hosted by the Obama administration in Greensboro, NC. Frank's story was featured in much of the press coverage of the event. You can read a clip here.

Frank had this to say of his experience: "It was an honor to represent both North Carolina and fellow heart and stroke survivors and the Health Care Forum held March 31st. Knowing that I would speak for the millions of Americans who share the same concerns regarding access to affordable health care, I took this opportunity very seriously. Every American living with a chronic disease knows the challenges of navigating the health care system and trying to obtain/maintain health insurance; all the while still providing for their family. My goal was to get this point across to North Carolina Governor Bev Purdue and Nancy-Ann DeParle, the Director of the White House Office of Health Reform who moderated this event.
My biggest constraint was that I only had two minutes to make my case and I'm a Southerner who talks slow! How do you distill six years of fighting heart disease, the stress toll this battle takes upon your family, and the life changes that must be made in order to make this happen into just two minutes? It was quite a challenge; hopefully I did well."

Thanks to both Karen and Frank for speaking out on behalf of all heart and stroke patients struggling with the healthcare system! You're the Cure!

You're the Cure on the Hill Advocate Spotlight: Cindy Flynn (PA)

As You're the Cure on the Hill 2009 closely approaches, don't forget to check the blog regularly to meet some of the amazing advocates from across the country attending this year's event. They each come to Washington, D.C. on April 21st and 22nd to tell their personal story about heart disease and stroke, as they work to influence Congress to support the American Heart Association's legislative priorites. Today meet... Cindy Flynn from Pennsylvania!

Cindy Flynn is a living, breathing example of determination. As a four-time stroke survivor, Cindy faces everyday with a mission: change one life, prevent one stroke, and it is all worth it. She has overcome the struggles and obsticals after her strokes and has used her passion to grow as a person and as an advocate. When she started getting involved with Advocacy, she began to see exactly what type of impact she could really have on a state and federal level, and she could not get enough! Cindy has since forged strong, personal relationships with all of her elected officials and has become a resource for her legislators on all things related to heart disease and stroke. She is a Field Representative for Pennsylvania’s State Advocacy Committee and she is a long time Lobby Day participant. When she is meeting with her legislators, her passion and her story combine to make the most compelling argument you are likely to hear. She has even been able to convince her Congressman to dye her hair red for National Wear Red Day and she has succeeded in getting many legislators to sign on as cosponsors to critical legislation. Way to go Cindy!

Stay tuned for more You're the Cure on the Hill advocate profiles throughout the month...

A Healthy Workforce is a Productive Workforce

At an event last week, Sen. Tom Harkin (D-IA) (right, shown with Sen. John Cornyn (R-TX))announced the reintroduction of the “Healthy Workforce Act”, which would offer tax credits to employers that provide wellness programs to their employees. To qualify for the tax credit, wellness programs must be certified by the Department of Health and Human Services, and must offer at least three services from a list of options including: health education and health screening; a workplace committee to encourage and track employee participation; behavioral change activities focused on tobacco use, obesity, stress, and other health risks; and workplace policies to promote health and wellness. The American Heart Association supports the “Healthy Workforce Act” and joins the bill sponsors in calling on employers and employees to do their part to make prevention and wellness part of the workplace.

In the House, a companion bill was introduced by Reps. Earl Blumenauer (D-OR) and Mary Bono Mack (R-CA).

CLICK HERE for more information on Workplace Wellness.

House Passes FDA Tobacco Bill!!

Just moments ago, the US House of Representatives passed the Family Smoking Prevention and Tobacco Control Act by a vote of 298-112. This is a great victory for heart disease and stroke advocates. The legislation would protect our nation's children from deadly tobacco addiction and the increased risk of heart disease and stroke that comes with it.

Many of our You're the Cure advocates called, emailed and faxed their legislators in advance of this vote. Thank you for all your efforts- they were vital to our success today. Congratulations on this success!

You can read the statement from Nancy Brown, CEO of the American Heart Association here:
" We’re extremely pleased this important legislation won approval in the House. This vote brings us closer to putting a deceitful and dangerous industry under the watchful eyes of government regulators. The tobacco industry has proven that it cannot be trusted to regulate itself and protect children from the deadly effects of tobacco use. Shameful attempts to addict children and young adults with misleading advertising campaigns must come to an end. This legislation will save lives, help break the cycle of addiction, reduce health care costs and force tobacco companies to educate consumers about the true health hazards associated with tobacco products. With more than a third of smoking-related deaths linked to heart disease and stroke, Congress must move quickly to send this bill to the President’s desk for his signature. We commend Chairman Henry Waxman and Representative Todd Platts for their leadership and call for immediate action in the Senate. To protect the nation’s health, we must ensure that deadly products on the market receive the same or greater regulatory scrutiny as a box of macaroni and cheese."