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!
Wednesday, April 29, 2009
Friday, April 24, 2009
Thanks for a Great 2009 You're the Cure on the Hill!
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.
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.
Labels:
Lobby Day,
You're the Cure
Monday, April 20, 2009
The First Day is Done
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
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
Labels:
Lobby Day,
Share Your Story,
You're the Cure
First Lobby Day
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
Kimberly Fox
Labels:
Lobby Day,
Share Your Story,
You're the Cure
First time @ Lobby Day!
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
Tracye Isaac
Labels:
Lobby Day,
Share Your Story,
You're the Cure
Lobby Day Update
Just finished the Social Media Workshop & met really great people @ the Survivor's Luncheon!
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Lobby Day,
Share Your Story,
You're the Cure
Survivor Luncheon
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
Lisa Deck
North Attleboro, MA
Stroke Survivor and Advocate
Labels:
Lobby Day,
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People with Heart
Just arrived in DC with the Am. Heart Assoc. folk and everyone has been wonderful. Met a couple of kids, which is great. Wish now I could've brought my own 15-year-old for the great experience of meeting people with such a love of life, and enthusiasm for sharing their stories, a drive to find cures for diseases that some of us have never even heard of. I've learned more about what a precious gift is life and each other. Meetings with government reps await us and we will all be involved in the reform and evolution of our government's committment to healthcare reform - tune in and get involved yourself!
Leslie Gregory, PA-C
Right To Health
Leslie Gregory, PA-C
Right To Health
Labels:
Lobby Day,
Share Your Story
Friday, April 17, 2009
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...
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...
Labels:
Advocate Spotlight,
You're the Cure
Wednesday, April 15, 2009
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...
Labels:
Advocate Spotlight,
You're the Cure
Tuesday, April 14, 2009
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...
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...
Labels:
Advocate Spotlight,
You're the Cure
Help Deliver Our Message
Even though you may not be coming to Washington, D.C. next week, you can help create an outcry for healthcare reform. Just visit http://www.heartsforhealthcare.org/ and send a message to your lawmakers.
Lack of health insurance and barriers to accessing quality care pose tremendous problems for patients who have difficulty affording essential treatments. Insurance policies with high premiums and practices that penalize those with pre-existing conditions create a challenging and expensive reality for heart disease and stroke survivors. That is why the American Heart Association is working to achieve a meaningful reform that serves the best interests of patients. And we need your help!
With 45 million Americans uninsured -- many of them with heart disease or stroke or at-risk for cardiovascular disease -- our patients have a big stake in health reform. Add your voice to the many You're the Cure advocates fighting for meaningful healthcare reform.
Don't waste another minute! Take action at http://www.heartsforhealthcare.org/ today, and urge family and friends to do the same.
Lack of health insurance and barriers to accessing quality care pose tremendous problems for patients who have difficulty affording essential treatments. Insurance policies with high premiums and practices that penalize those with pre-existing conditions create a challenging and expensive reality for heart disease and stroke survivors. That is why the American Heart Association is working to achieve a meaningful reform that serves the best interests of patients. And we need your help!
With 45 million Americans uninsured -- many of them with heart disease or stroke or at-risk for cardiovascular disease -- our patients have a big stake in health reform. Add your voice to the many You're the Cure advocates fighting for meaningful healthcare reform.
Don't waste another minute! Take action at http://www.heartsforhealthcare.org/ today, and urge family and friends to do the same.
Labels:
Health Care Reform
Monday, April 13, 2009
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...
Labels:
Advocate Spotlight,
You're the Cure
Friday, April 10, 2009
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...
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...
Labels:
Advocate Spotlight,
You're the Cure
Wednesday, April 8, 2009
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...
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Advocate Spotlight,
You're the Cure
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!
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!
Labels:
Health Care Reform,
Healthy Workforce Act
Tuesday, April 7, 2009
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 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!
Labels:
Health Care Reform,
You're the Cure
Monday, April 6, 2009
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!
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...
Labels:
Advocate Spotlight,
Stroke,
You're the Cure
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).
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.
Labels:
Healthy Workforce Act,
Prevention
Thursday, April 2, 2009
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."
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."
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