Action Alert – Support Congenital Heart Disease Research Funding

Email your legislators:

FUNDING CDC DATA COLLECTION

 

Action Needed

Email your lawmakers and ask them to provide $7M to fund CDC surveillance efforts.

  1. Visit your lawmaker’s website where you will find a contact us form.  You can find their website at www.house.gov or www.senate.gov
  2. Using the suggested talking points and your own personal information, edit the letter below and paste it into the online form.
  3. Let us know you took action and complete the I did it! form on our website.

Suggested Talking Points:

  • CDC funding has already been authorized to help better understand the congenital heart disease population
  • Currently, $2.9M has been appropriated, and CDC is funding 3 pilot adolescent and adult surveillance projects.
  • Additional funding is needed to continue and expand these efforts across the life span, including pediatric populations.

Email template:

Dear Senator/Congressman [Fill in name here],

I am writing to ask you to include $7M in funding for the Centers for Disease Control and Prevention to adequately support congenital heart defect surveillance across the lifespan, in your FY2015 request.

[Using 4-6 sentences, tell your story here and why research is important to you.]

As the most common birth defect, resulting in costly life-long care, congenital heart disease remains a serious public health burden and must be made a priority.

If you would like any additional information or sample report language, please contact advocacy@conqueringchd.org.  

Thank you,

[Your Name, Your city/state]

To learn more about the PCHA advocacy program, watch this video, or visit our website.

Webinar: Awareness, Knowledge, Action – Congenital Heart Disease Advocacy

Awareness, Knowledge, Action:

Why you should care about advocacy, and what you can do!

Watch the Webinar today!!!

This introductory look into advocacy provides quick and easy ways to get started.

We are encouraging everyone to learn how to get involved and be a part of something bigger!

By watching this video, you will:
  • Learn why it is important to move beyond awareness to knowledge and advocacy.
  • Get up to date information about PCHA’s advocacy priorities
  • Learn about our Share your Story and 1 Voice/40,000 Strong Campaigns
  • Find out more about how you can get involved and make a difference.

Congenital Heart Awareness – from our Partners at the CDC

Today’s guest post comes to us from the Centers for Disease Control and Prevention (CDC).  With-in the CDC, the National Center for Birth Defects and Developmental Disabilities (NCBDDD) is dedicated to helping people live to the fullest. They have been incredible champions for congenital heart defects and we are privileged to have them as a partner! This post is the first of 2 from the NCBDDD to celebrate national efforts to raise awareness of congenital heart defects. 

Isabella2

Meet Isabella. She represents 1 in every 100 babies born in the United States each year. Her parents first found out that she had a heart defect at 19 weeks of pregnancy. Remembering back to that day, her mother says, “the ultrasound tech hovered over her heart during the ultrasound, and our excitement quickly came to a halt. Our fear was confirmed a few moments later by our OB-GYN, and it felt as if our world was crashing down. Our daughter had a heart defect. Our family had no history of heart defects. Why was this happening to us?”

We at CDC are committed to finding the answers to these types of questions. These common conditions not only impact the individuals living with a heart defect, but also their families and communities.  Congenital heart defects are an important public health issue and CDC works to learn more about these conditions and improve the health of those living with them. We do this through public health tracking and research.

To track congenital heart defects, CDC has established state-based tracking systems. Information obtained from these systems help us understand if the number of people affected is increasing or decreasing over time and help us learn if these conditions are affecting certain groups of people. Tracking systems also help states plan for services for affected individuals and help ensure that babies and children receive needed care and services.

As medical care and treatments have advanced, people living with a heart defect are living longer, healthier lives. In fact, there likely are about 2 million children and adults in the United States living with a congenital heart defect. CDC recently launched a promising new program to monitor congenital heart defects among adolescents and adults in 3 sites (Georgia, Massachusetts, and New York) to understand health issues and needs across the lifespan that can help improve the lives of individuals born with these conditions.

We use the data we collect to learn more about what might increase or decrease the risk for heart defects as well as community or environmental concerns that need more study. CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on two large studies of birth defects: the National Birth Defects Prevention Study (1997-2011)  and the Birth Defects Study to Evaluate Pregnancy Exposures (which began in 2014). These studies work to identify risk factors for birth defects, including heart defects, in hopes of identifying prevention opportunities.

Each February, CDC joins families and partners to recognize Congenital Heart Defect Awareness Week. We look beyond the numbers and remember the individuals, like Isabella, affected by these conditions. After multiple procedures and open heart surgery, Isabella is almost 2 years old, a typical toddler with lots of spunk and personality. She loves playing outside with her older brother and playing with her many baby dolls, including listening to their “heart.” Her family would like other parents facing this unknown world of heart defects to know that there is hope. They encourage others to “Help spread the word about heart defects and how amazing these kids are! Our daughter, Isabella, is very special and inspires us daily!” Together with states, academic centers, healthcare providers, and other partners, CDC works towards a day when all babies are born with the best health possible and every child thrives.

moore_200bWritten By: Cynthia A. Moore, M.D., Ph.D. Director
Division of Birth Defects and Developmental Disabilities
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

5 Myths About Telling Your Story

Your story can be a very useful tool when working with others to make a difference.

Move past the myths and share your story on our website!

1) No one wants to hear my personal story.

covering ears

What you tell your friends is one thing.  But, it’s different when you are telling your story to a person with the power to make a change. Whether it’s a lawmaker, a physician, researcher, or insurer, they need to hear your story.  You see, all the numbers in the world are not nearly as powerful as your personal story, your experience.

2) You have to be a social person to tell your story.

pwhisperhappy

There are lots of ways to tell your story that don’t even involve talking!  Start by getting your story in writing.

There is no one exact way to do it. After nine years of rewriting my story, I now have a short version, a long version, a funny version, and tucked inside for special occasions, I have that very emotional version that still takes my breath away.

Once you have your story down on paper – submit it to our website!  We are building a collection of stories to help inspire others and we look forward to adding yours.

3) Telling your story takes a lot of time.

alarm_clock

It might the first few times.  It took me several hours to get my thoughts on paper, several days until I was finally happy with it, and it has changed many times over the years.  Now, I can write it in a quick email or share it in a passing conversation.  I’ve even hammered out a 30 second version I can tell someone on the elevator!

4) You have to be a heart defect expert for anyone to listen.

expert

You are the expert – you, or someone you love, has been impacted by heart defects and you know more about your experience than anyone else.  You don’t need to know the medical details or the latest research.  It is your story that matters.

5) Telling your story doesn’t make a difference.

mosquito

Oh, yes, it does.  I have heard countless times how someone’s story has changed minds, tipped the scales, and moved mountains.  Mine has, and yours can, too. Try it and see what happens.

The Pediatric Congenital Heart Association firmly believes in the power of our stories and is committed to bringing them together to be the resounding voice of the CHD Community.

We are building a collection of stories that can be found on our website.  A few stories will be featured on our home page.  Others can be found using the links on our blog page. These stories can be used to inspire others to take action, too.  Be a part of something bigger – share your story today, because together, we will make a difference.

 Amy Basken – President, Pediatric Congenital Heart Association

 

Mirabel Atkinson

Nine-year-old twins, Mirabel and Sofia, share a special bond.  Born at 32-weeks, they were more exceptional than most identical twins in that they shared a placenta and an amniotic sac.  But one significant difference they have is that Mirabel was born with a congenital heart defect, or several to be more precise, including hypoplastic right heart, transposition of the great arteries and a couple others.  We were fortunate to know about all of these complications before our girls were born, but that didn’t change how challenging the pregnancy and early years have been.

Being born early, they both required time in the NICU.  Sofia mostly just needed to grow and was discharged at about one month.  Mirabel’s case was different and the doctors anticipated her needing the first of three staged surgeries (the Norwood, the Glenn and the Fontan) within days of birth.  But because she was so small, we all waited and watched—through many good and bad days.  And then at two months, when the doctors finally determined that she could hold off on the Norwood procedure and have any necessary changes to her heart combined with her Glenn, they discharged her.  We frequented the cardiology clinic from that point on, often with several visits a week.

Mirabel had her first heart catheterization at about 6 months.  I thought it was the end of the world when we handed her over to the anesthesiologist and I watched her terrified eyes silently asking me what was happening.  But I learned that wasn’t anything compared to surgery; she had her first open heart, the Glenn, at 8 ½ months.  Mirabel’s strength and tenacity had already been proven and she did remarkably well during her Glenn and was discharged after only 6 days.  We maintained regular weekly and then monthly visits to her cardiologists.  She had a second catheterization, mostly for diagnostic purposes in preparation for her next surgery, at about 15 months old and then the Fontan surgery at age two.  Once again, she responded well and was discharged after only 8 days.

We knew Mirabel wasn’t “cured” at that point.  The regular cardiology check-ups, her slower growth (compared to her identical sister), daily medications, how quickly she caught colds and the flu, and her general lack of energy all served as reminders to us that she was different.  But we tried to act and live as normally as we could.

And then at age 5 she needed another heart catheterization to close a fenestration (vent hole) in the hope of improving her oxygen saturation levels.  We had always been open about her heart condition and frequently looked at photos, but she didn’t remember any of the previous interventions, and so when we told her she needed to have the cath, she didn’t take the news well.  It was really hard listening to her ask questions like, “how big of a knife are they going to use to cut me open…will it be like the ones in the kitchen?”  But, guided by an excellent social worker, we made it through with only a few minor complications.  Her kindergarten class made a giant heart card with well wishes and all of their signatures.   And we thought we were done for a LONG time.

Then during the summer when she was 6, we visited the cardiologist for a regular follow-up and he told us that she needed another “surgical intervention” right away.  Eleven days later she was in surgery to enlarge a hole (VSD)—a “minor” open-heart surgery, as they go.  Mirabel was the calmest of anyone in the family; Sofia struggled the most.  Sofia didn’t like the attention Mirabel was getting and was scared about what she was hearing.  We all had to work through this together as a family.  She healed a little slower than the previous two open-hearts, but was still only in the hospital 8 days.  And she started first grade four weeks to the day after her surgery.   But it takes time for everyone to recover from something like this.

Two and a half years later, Mirabel is doing well and we are relatively “normal” again.  Her last surgery granted her more strength and energy than we had ever seen.  She has been well enough to play soccer with her sister in a neighborhood league, a far distance from when eating or crying too hard would wear her out and she would turn blue.

While Mirabel’s road hasn’t been easy, and her journey to keep her heart working as best as possible isn’t over, we have met many exceptional people and made some wonderful friendships with those having similar experiences.  We know what a courageous little girl she is and when we see fits of stubbornness we are quickly reminded that her stubborn attitude is what has kept her going through rough times.  Sofia has been her constant cheerleader and their bond and love they share will remain strong forever.

Understanding and Treating Heart Defects – National Institutes of Health

Today’s guest post comes to us from the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health. The NHLBI oversees several large research programs focused on heart disease in children and funds scientists at hospitals and universities throughout the United States who research the causes and problems associated with congenital heart disease.  Research promotion is one of the founding priorities of the Pediatric Congenital Heart Association.  We would like to introduce you to some of NHLBI’s research efforts.

Every 15 minutes, a child in the United States is born with a congenital heart defect, the most common lethal birth defect. Today, thanks to screening, sophisticated medical care, and research advances, most of these children not only survive infancy but live to adulthood, resulting in a new set of challenges across the lifespan.

baby smiling

The NHLBI funds clinical research grants to help address these new challenges, as well as research on the causes of congenital heart defects. For example, NHLBI-funded research from the Pediatric Cardiac Genomics Consortium (PCGC) shed new light on causes of congenital heart disease. The results of this study will help shape the direction of future research, and the answers we have now may help change how medicine is practiced. Learn more about the PCGC’s exciting research through a conversation between Dr. Richard Lifton (Yale University), one of the PCGC investigators, and NHLBI Director Dr. Gary H. Gibbons.

NHLBI-funded programs focused on heart disease in children include:

  • The Pediatric Heart Network (PHN), which started in 2001, has completed nine studies focused on improving outcomes and quality of life for children who acquire or are born with a heart condition. To learn more about the PHN, including how to participate in one of our ongoing research studies, please visit our website at www.pediatricheartnetwork.com.
    • The Bench to Bassinet Program (B2B) was launched by the NHLBI in 2009 to learn more about how the heart develops and why children are born with heart problems.  B2B is made up of two research groups: the Pediatric Cardiac Genomics Consortium (PCGC) and the Cardiovascular Development Consortium (CvDC). The PCGC is currently conducting a study called CHD GENES at 10 clinical centers. The study is seeking people of all ages with congenital heart disease to obtain a DNA sample and collect detailed information on how people with congenital heart disease look and act and their medical problems. To learn more about the CHD GENES study, please see our website at www.benchtobassinet.org/CHDGenes.asp.

In addition, the NHLBI is committed to helping parents and children understand the benefits and realities of taking part in clinical research. The Children and Clinical Studies website includes videos of researchers, parents and children sharing their stories about participating in research studies and about what happens during and after a study.

We hope that you will join NHLBI’s efforts to understand and treat congenital heart disease by raising awareness about the importance of research or by participating in a research study.

Kristin M. Burns, M.D.

Burns Formal PhotoKristin is a Medical Officer in the Division of Cardiovascular Sciences at the National Heart, Lung, and Blood Institute of the National Institutes of Health.

 

Cooper bowtie

My son, Cooper, is my heart hero.

Cooper came into our lives completely blue, motionless, not breathing, and with a faint heart beat. We watched helplessly as a doctor and nurse performed CPR on him the first two minutes of his life until he finally took his first breath.

From the moment he was born, he was a fighter, a trooper, and a heart warrior. We thought that the worst was over, but hours later our world came crashing down. When the nurse came in to take him for his routine newborn testing, she found a noticeable difference in the oxygenation levels between his upper and lower extremities, no femoral pulses, a heart murmur, and that his lower extremities were bluish while the rest of his body was nice and pink.

The transport team from a larger hospital came immediately and took him away for further testing on a possible heart defect.They felt the defect was too severe and needed to call the Children’s Hospital who came and took him away on his second ambulance ride at less than two days old. They confirmed that he had a critical congenital heart defect that needed to be operated on in order to survive along with various other heart defects. His heart was not perfect and our hearts were completely broken. He looked absolutely perfect and it was so hard to accept that something could be so wrong with him.

At six days old, the doctors and surgeons finally felt he was ready to have open-heart surgery. The surgery was successful and even though he had dozens of tubes, wires, and monitors attached to his body, he was perfect in our eyes. Although he will need at least two more open-heart surgeries in his lifetime, he is amazingly strong and inspiring. There has not been a single day, since he was born, that I do not think about all that he went through his first two weeks of life and the special heart that he has. He is my heart hero.

Cooper cape

Save the Date! Webinar – March 20

Awareness, Knowledge, Action:

Why you should care about advocacy, and what you can do!

Webinar Save The Date

We are encouraging everyone to learn how to get involved and be a part of something bigger!

March 20th; 8pm ET/ 7pm CT

Join us –

  • Learn why it is important to move beyond awareness to knowledge and advocacy.
  • Get up to date information about PCHA’s advocacy priorities
  • Learn about our Share your Story and 1 Voice/40,000 Strong Campaigns
  • Find out more about how you can get involved and make a difference.

Registration information will be available shortly.