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. 

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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.

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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.

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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.

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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.

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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.

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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

 

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.

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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.

 

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.

 

Congenital Heart Awareness – Saving lives in Iraq

Today’s guest post comes to us from half-way around the world.  Preemptive Love Coalition is a team of champions who live and work in Iraq, striving to eradicate the backlog of Iraqi children waiting in line for lifesaving heart surgery in pursuit of peace between to communities at odds. 

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1 in 10.

That’s how many children are now reportedly born with a heart defect in some Iraqi cities.

Combine this high CHD rate with Iraq’s near total lack of pediatric cardiac surgical teams, and you’ve got a backlog of thousands of families who are stuck.

Thousands of families. No doctors. No options.

Preemptive Love Coalition exists to provide lifesaving surgeries for these children in pursuit of peace. Our team lives in Iraq, moving and working among the families we seek to serve.

By hosting lifesaving “Remedy Missions” inside the country we’re able to train the local doctors and nurses while saving lives. Each mission creates more CHD survivors, more parents who can rest at ease and more communities that can celebrate a hopeless situation made right.

And for many in the Coalition, CHD is a very personal issue. Either they lived through it or a loved one did, and their stories encourage us. They remind us that this problem in Iraq—something we’ve dubbed The Backlog—can be beaten!

This month, we are inviting you, CHD survivors around the world, to share what you’ve been through—we want to celebrate your survival!

To do that, we’re offering a free copy of our book to anyone who has ever had a heart defect. If you have a heart defect, simply email us your address or leave a comment below and we’ll mail you a copy. If you know someone else who has one, forward this post to them and we’d love to send them a book, too.

We’ve spent years celebrating lives saved here in Iraq—now let us celebrate lives saved where you live!

preemtive love logo

Matthew Willingham works as the Communication Director for Preemptive Love Coalition, an Iraqi-based development organization providing lifesaving heart surgeries for Iraqi children in pursuit of peace. Read Preemptive Love’s on-the-ground stories on Twitter and Facebook, or grab a free copy of their new book here.

CHD Awareness Week – Do Something.

This is a busy time of year for those of us in the Congenital Heart Disease Community.  It is Heart Month.  Today is Go Red Day.  It is also the first day of CHD Awareness Week.

Spreading awareness about the most common birth defect is the critical first step in Conquering CHD.  By spreading awareness, we can educate others about this growing public health burden that is devastating to families across the country.  The blog this week will feature posts from Preemptive Love, the CDC and more, as we work with our partners to help spread awareness in our communities, in Washington D.C. and around the world!

However, I strongly believe that awareness is only impactful when it is paired with education and leads to action. During the frenzy of awareness activities this month, we are encouraging the community to share our message: Be Aware. Learn More. Do Something.
Be Aware

 “I alone cannot change the world, but I can cast a stone across the waters that create many ripples.” – Mother Theresa

Here are a few ideas about what you can do:

1) Be a part of something bigger.

Become a partner of PCHA.  Join the rapidly growing movement that is making a difference.
There is no obligation on your part.  By signing up to receive our emails, you will get an inside look at PCHA.  You will get advanced notice of opportunities to volunteer, advocate and influence.
Sign up today!

2) Use your influence, right away!

Whether you realize it or not, you have a circle of people around you that listen to what you say.  Encourage them to join the movement, too.  Encourage them to sign up, too.  The more people united in messaging and action, the greater impact we can have! 

3) Volunteer.

Your time and talents are very valuable to PCHA.  Our volunteer needs change regularly, but we will try to involve you in any way that we can.  If you are interested in volunteering, please email volunteer@conqueringchd.org.  Include how much time you are able to commit on an average monthly basis and what ways you think you’d like to help.

4) Advocate.

Use your story to make a difference.  We will be asking you to email, call or visit decision makers.  Whether it is a doctor or lawmaker, your story is powerful and can move someone into action!  Click here for our most recent alert to say Thank You to your lawmakers.

5) Donate.
Your story is powerful.  Your dollar is powerful, too.  In order for PCHA to be successful, we need to fund our projects.  Give what you can, every dollar counts.  Give for someone you love, give for yourself, give to help the thousands of people dealing with CHD that will, in turn, benefit from the education, research and advocacy support we provide.
Donate Today!

100’s of Hearts

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Every day, there are over 100 babies born with a heart defect in the U.S. That’s thousands of hearts each year. Add those to the 100’s and 100’s and 100’s who are already living with heart defects. That’s millions of hearts.

But let’s bring into focus just one heart. That one baby who, by all odds, was that 1 in 110. That one born with the heart defect. It could be your daughter, your son, your niece or your nephew. It could be your Mom, your brother, your neighbor, your classmate, or even you. Who do you know that has a story about heart defects?

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The Pediatric Congenital Heart Association is committed to bringing these stories together, amplifying them to make a difference.

Uniting a community is a big task, however. We can’t do it without your help. PCHA is primarily funded by individual donors, like you. In order to be successful, we need to unite a community of partners and supporters.

By making a simple donation of $20 or more to our 100’s of Hearts Campaign, you are helping to empower the 100’s, thousands perhaps millions.

Through Education – “When we first learned about my daughter’s heart defect, the internet was a scary place to go for information.” – Mother to beautiful girl with Hypoplastic Left Heart Syndrome. Our Trusted Resources program will provide quality information to people when they need it, where they need it.

Through Research – “My son is with us today beacause of life saving research.” – Mother of child who’s defect was detected through screening. Through promotion of research, as well as collaboration in new and existing projects, we recognize that research is key to improving outcomes.

Through Advocacy – “The statistics will always be there, it’s your story that we remember.” – U.S. Senate Staff Member. Empowering patients to tell their story to lawmakers

Pick one special heart to honor. Help us reach 100 hearts! 

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For more information about PCHA, sign-up to receive our newsletters…

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Even more new things…

I thought launching accounts in Facebook,TwitterLinkedIn, and Instagram was quite an accomplishment for PCHA. 

But wait – there’s more! 

Official Newsletter

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PCHA just sent out its first official newsletter.  Don’t miss out on any behind the scenes information, updates on our latest projects, and opportunities to volunteer or advocate.  Click here to find our rudimentary sign-up form on Facebook, while we patiently wait for our website.

Now accepting online donations!

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We couldn’t make all of this happen without your generous support. PCHA is primarily funded by individual donations – by you.

We are grateful to those of you who were founding donors, helping us get our feet off the ground in 2013!

In order to reach our goals we need your help.  Please consider donating to support our educational programming like Smart Patients, research partnerships with groups like the CDC, and advocacy efforts to bring continued success in Washington.

Simply click the donate sign – it’s safe, quick and easy!

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Thank you for helping us to help you!

 

PCHA goes social…

Well, after a week of trial, error and lots and lots of learning… 

The Pediatric Congenital Heart Association is now social.  

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Find us on FacebookTwitter,LinkedIn, and Instagram.
Don’t forget about our website!

Facebook:

Pediatric Congenital Heart Association

Find us, like us, share us.  Share with us – tell us what you’ve been up to, why CHD education, advocacy or research matters to you.

(There will be a share your story feature on our website, too!)

 

Twitter:

PCHA_CHD

Find us, follow us! Tweet away, my friend.  Some hashtags to consider: #CHD, #1in100, #1in33, #CHDAware, #CHDAdvocacy, #Conqueringchd

 

LinkedIn:

Pediatric Congenital Heart Association

Find us, follow us! See what some of our organizational partners are up to, as well!

 

Instagram:

pcha_chd

Find us, follow us! See what we are up to, in pictures!  Join our photo campaigns throughout the year.  Tag us in your CHD related efforts.  Some hashtags to consider: #CHD, #1in100, #1in33, #CHDAware, #CHDAdvocacy, #Conqueringchd