More from Lobby Day... Meet Terri and Shayna Turner

Lobby Day was indeed an amazing experience, with incredible advocates from all across the country. As our important work continues after Lobby Day, we want to continue to introduce you to fellow You're the Cure advocates who are fighting for heart disease and stroke patients. Today, meet... Terri and Shayna Turner from Arizona.

Terri and Shayna just attended Lobby Day in Washington, D.C. and Terri shared their story with us.

My story begins with the unexpected death of my 49 year old sister from a massive heart attack. She had fallen very ill the night before and by the next day, before her lab results came back, she had left us to be with the lord. Why? That question would never be answered as the doctor had canceled the autopsy.
A year and a few months later, Mom leaves my 2 brothers, other sister, and me to greet our older sister; massive heart attack, once again no warning. I had already started asking questions after my sister's death, and continued on that path only to repeatedly be told, “You are young and healthy, and your cholesterol is fine”.
A few years later I receive a phone call from one brother, that our older brother had died while snow blowing; no warning signs, he was 53. I really began asking questions and asked the doctors to do more. I was told there is really nothing more to do, that they could not explain what was going on…my other brother and I obviously figure out that some kind of genetic heart disease must run in our family. We were brought up with very healthy eating habits and physically active. I am a vegetarian.
A few years later I receive a phone call from my sister-in-law; my other brother died of a massive heart attack while driving home; he was 54, once again, no warning signs.

Shayna and I have no choice but to stand proud, head and shoulders above the crowd, as we face our losses. Shayna and I feel we have been left behind to help others who face life’s trials with heart disease, just as we are.
As the baby of the family, I find it incredibly hard to comprehend why a person should have to go through this before being heard. I later found out that a simple blood test, covered by insurance, would have detected the very rare, but not unknown genetic heart disease that has struck our family.
I took it upon myself to have my 11 year old daughter tested although so many people said she is “too young”. We both see the same specialist of heart disease and genetics. We take daily medications and continue to exercise and watch what we eat. Shayna is also a vegetarian.
Shayna and I are survivors with what took their lives all too soon…our fight is one against a very rare genetic heart disease of which there are only about 40 known cases world wide.
In our life faced with heavy burdens and many challenges, we choose to be for a cause for the cure together. We strive to have great experiences in life, and along our journey in life we are on a mission to keep our family’s legacy alive by doing any and all things possible to send out a loud and clear message toward the importance of funding for research into heart disease.
Why should my 15 year old daughter have to live with the thoughts of passing this disease on to her children? She is already facing each and every day with the fear of losing her mom. I continue on my journey of beating this for her through my actions and words… we are going to beat this and that is why funding for research is so important and definitely needs to continue. We dream that our story is such an important reminder that even in challenging financial times, the need for supporting important causes does not go away. Without the ongoing support of volunteers and donors, lives will be lost, sometimes all too soon… we would like to keep our mission on the path of awareness and continue to move forward with this mission as advocates. Through these efforts, we hope to ensure that lifesaving research and programs can continue to benefit families affected by heart disease and stroke today and tomorrow.
The hurt and loss we carry inside is a burden that we get through by faith, it does not make it go away, but we choose to focus on living our life each and every day and to always follow our dreams… when one part of our journey ends we remember that it is not the end, but instead another beginning. When one discovery is found, it can lead to the discovery of one, or many other leads to a cure.
We have to look at life with a new purpose, what better purpose than to advocate with all the wonderful people who work for the AHA. We will take our time when we reach a crossroads; we will be mindful of each step we take, otherwise we may get off track. We strive to keep our ideas exhilarating, but won’t translate that feeling into speed, but instead translate it into dedication and perseverance…

Terri and Shayna are survivors and passionate advocates for the American Heart Association. Stay tuned for ways you can join them in fighting for those affected by heart disease and stroke.

You're the Cure on the Hill Advocate Spotlight: Stephanie Dempsey

I can't believe it's almost here- You're the Cure on the Hill 2009! We continue to share stories of advocates who will be joining us in Washington D.C. to ask Members of Congress to prioritize healthcare reform and fund heart disease and stroke research and prevention programs. Today, meet... Stephanie Dempsey from South Carolina!

Stephanie Dempsey is 37 years old and a heart disease survivor from Varnville, South Carolina. In November of 2000 at the age of 30 she underwent quadruple bypass surgery for severely blocked arteries due to high cholesterol. Over the past seven years Stephanie has had placement of multiple stents and in September of 2007 she once again had to undergo bypass surgery.

Stephanie’s heart disease is hereditary and has impacted all of the women in her family. Stephanie’s only sister died at the age of 28 from heart disease. Her mother, who is 63, underwent quadruple bypass, and her grandmother died in 1997 from heart disease.

Stephanie’s story is powerful. It is one that demonstrates heart disease can affect women at any age. For the past several years, Stephanie has been an enthusiastic volunteer for the American Heart Association. She serves as a Red Dress Ambassador for a local hospital and actively seeks out community groups to educate women about the impact of heart disease. In addition to her outreach in her community, Stephanie is a passionate You’re the Cure advocate and has attended AHA’s federal lobby day for the past three years.

Stephanie goes through rigorous treatment for her disease, but she is always a trooper and shows up when she is needed. She knows she is making a difference, and she calls being an AHA advocate her job.

Stephanie’s experience helps to show why the American Heart Association and its volunteers are advocating for more research, education, and screening to help prevent and cure heart disease, stroke, and other types of cardiovascular disease, the No.1 killer of women in South Carolina and the United States.

Stay tuned for a few more You're the Cure on the Hill advocate profiles before we all arrive in D.C. Monday...

You're the Cure on the Hill Advocate Spotlight: Emily Block

We're just a few days away from You're the Cure on the Hill 2009. We continue to share stories of advocates who will be joining us in Washington D.C. to ask Members of Congress to prioritize healthcare reform and fund heart disease and stroke research and prevention programs. Today, meet... Emily Block from California!

From Emily:
It is rare that a twenty-year-old can say that she has learned to read and walk twice in her life, but I can. I have had three strokes that have dramatically changed my life. When I was nineteen, I had heart surgery and at twenty I was diagnosed with Postural Orthostatic Tachycardia Syndrome, a little known and debilitating cardiovascular and neurological condition that is pushing the limits of research. I have had a challenging journey that is both frustrating and amazing, as I have seen both the limits and the strength in myself and others.

I have personally benefited from past research and current American Heart Association programs and I would like to help expand support for the programs that might help others like me in the future. I have thoroughly enjoyed volunteering for the American Heart Association and participating in San Luis Obispo’s Heart Walk. Participating in the American Heart Association’s Congressional Heart and Stroke Lobby Day will be a wonderful opportunity that will allow me to take my commitment for the fight against heart disease and stroke to the next level.

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

You're the Cure on the Hill Advocate Spotlight: Michaela Gagne

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... Michaela Gagne from Massachusetts!

As a student at Durfee High School, Michaela was a top scholar-athlete and graduated in the Top 10 of her class of 500 students. She was a three-sport varsity athlete, participating in basketball, soccer and track and field. During her senior year, she was diagnosed with Long QT Syndrome, a genetic cardiac condition that is especially dangerous for athletes because of the way it causes a response to stress on the heart. Michaela did not let her diagnosis slow her down, in June 2006 Michaela was named Miss Massachusetts. Given her experiences with Long QT Syndrome, combined with an exemplary positive outlook relative to a life changing event, Michaela used her profile as Miss Massachusetts to highlight her platform, women and heart disease. Michaela has been selected by the American Heart Association to serve as an official National Go Red for Women spokesperson. She has taken this role very seriously by being a compassionate speaker willing to share her story at Federal Lobby Day as well as a special HEART for Women Act briefing in Washington DC. Michaela also continues to make the public aware of sudden arrhythmia death syndromes and their lethality, and is a dedicated advocate ensuring that Automated Cardiac Defibrillators (AED’s) are mandatory in public schools throughout Massachusetts. Michaela has been an outstanding champion for the placement of AED’s. AHA could not ask for a better spoken, compassionate and dedicated advocate for the cause. Michaela was an instrumental advocate for Kayla’s law, requiring all health clubs to have AED’s in Massachusetts. Michaela’s background in education has given her insight in helping with the placement of AED’s in schools.

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

You're the Cure on the Hill Advocate Spotlight: Melanie and Nolan Domrase

We are just one week away from You're the Cure on the Hill 2009. Excitement is certainly building here in Washington D.C. as we look forward to greeting advocates from around the country. This week, we continue to profile the advocates who will soon share their stories with our nation's lawmakers. Today, meet... Melanie Domrase and her son Nolan from Michigan!

Nolan was born on May 8, 2007 at 41 weeks gestation via c-section after turning breech at 39.5 weeks. He weighed 8 pounds, 6 ounces and was 22 inches long. I had a completely uneventful pregnancy and birth other than him flipping at the last minute. He was the most beautiful baby I had every seen. I studied him intently. I noticed that Nolan immediately rolled to his left side after birth and that his right eye never opened. The left-side issue never concerned me in the hospital, but I had a doctor called in because I thought he was perhaps blind on the right side. The doctor came in, opened his lid, shined a light in, shut his lid and said, "No, he isn't blind." and left. Later, we would realize that his left side preference and closed right eye were obvious indicators of Nolan's fetal stroke. He continued to be left-side dominant and have a weak right eye, as well as a little asymmetry. We would position him on his right side after he fell asleep to round out his head for cosmetic reasons. Around six months at his well baby visit, I mentioned the left side dominance again to the doctor and he said not to be worried, but to come at 8 months, instead of 9, for the next well baby visit. At about 7 months my son was playing in the living room and two major things happened. One was that he made a movement with his right arm that sent chills down my spine. Later I will explain why. Two was that he tipped over on his right side, never tried to catch himself, fell on his face and continued to play with his left hand while laying on his face. He wasn't even aware he was on his face! The movement with his right arm scared me to death because I knew that movement. My father suffered a stroke at home, in the middle of the night, when I was 15 years old. His rehabilitation was a family affair and I learned a lot from the experience, especially about movement. Looking at my son was like looking at my father. I immediately called the doctor and went in the next day. I took Nolan's clothes off, set him on the table and said, "My son is moving like he had a stroke." The doctor looked at me like I was crazy. I didn't know children could have strokes, let alone in utero. I tried to convince myself that wasn't it because I would know if my son suffered a stroke after birth, especially after my previous experience. It's a serious event. The doctor sent me to a physiatrist. The physiatrist sent me to PT/OT, for a neurological evaluation and for an ultrasound. The physiatrist called me immediately after the ultrasound and said that they found something on his brain and to get to a neurologist as soon as possible. Nolan was already in PT and OT and the therapists agreed that he moved like he had a stroke. It is a very distinguishable movement. The neurologist did an evaluation and ordered an MRI and EEG. She confirmed that he suffered a fetal stroke in the second trimester of my pregnancy. Her prognosis was very good for Nolan; however, he continued to fall behind quickly developmentally. My husband and I decided to just go for it. Nolan has had between 4 and 7 sessions of physical, occupational and speech therapy per week since his diagnosis. We have done everything in our power to center our lives around his affected side. Nolan went from literally not knowing the right side of his body existed to using both hands and feet almost equally, crawling, walking and now almost running. He continues to amaze us with his intelligence every day. He has learned to sign because of his language delays. We are very hopeful for Nolan's future and we continue to work with him in every part of his life every day. All of the pain I endured as a teenager with my father's stroke, which led to his eventual death six years later, has become so clear to me. Had my father not suffered that stroke, I would not have been able to diagnose my son so early. My father suffered so that my baby could survive. Who knows how long Nolan would have gone undiagnosed had I not been through this with my father. As strange as it sounds, my own story amazes me sometimes. It's a miracle to me the way things have come full circle and I am thankful for it. I thank God every day for Nolan's stroke. I wouldn't want my life any other way.

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

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...

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...

Advocate in Action-

Youth Advocate Exercises His Voice for Physical Education

On July 24th, the House of Representatives’ Education and Labor Committee held an important hearing to learn about the benefits of physical education for our nation’s children and the American Heart Association was proudly represented by Robert Keiser, an 18-year old advocate from Florida, and Dr. Russell Pate, Associate VP for Health Sciences and Professor at the Arnold School of Public Health at the University of South Carolina (watch Dr. Pate’s testimony on YouTube).
“I am here today because I believe that, by sharing my own personal story, I may help you find ways to help other children overcome their struggles with obesity,” Robert said during his testimony before committee members.
Having overcome his own battle with obesity as a child, Robert has sought to help other kids succeed, leading members of the Legislative Advisory Teen Council he helped establish to Tallahassee to lobby the state’s legislators in support of a physical education bill (which passed unanimously in the Florida House and Senate and was signed into law in May 2007). And now, he has turned his attention and passion toward urging Congress to support the FIT Kids Act.