National Reading Month: You’re Here for a Reason

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 3rd post of our series, PCHA’s Jessica Chenevert talks with us about one special book. Read on to hear why You’re Here for a Reason holds a special place in her heart.

Barrett checking out his book

When I bought this children’s book, I had no idea that the first time I would read it to my son, Bear, I would be brought to tears. Never in my life has a book made me cry. The book is titled, “You’re Here for a Reason,” and it’s written and illustrated by Nancy Tillman. I decided to buy it, because I loved another one of her books, “On the Night You Were Born,” which Bear had received as a gift for his first Christmas. Not only does the book have a beautiful rhyming phrases, but it is written in a way that floats off the pages and can truly relate itself to your life. In my case, the words reached through the pages and spoke to me about Barrett’s journey with Congenital Heart Disease. The book, as far as I know, has no relation to heart disease and wasn’t written with a heart kid in mind, but every word I read applied to it perfectly.

Barrett is here for a reason. Every one of us is. Nancy shows her readers how each of us fits into life’s big picture and how this world would simply be incomplete without each of us in it. As we sat there after reading the book, I held my sweet, strong warrior and rocked him back and forth and thought it was such a perfect gift for children and families living with CHD.

One of the fun things I am able to do at PCHA is pick a quote and pair it with photo to create an inspirational design of sorts. Naturally, I created one using a passage from one of these great books and posted it on social media. To my great surprise, the author herself engaged in the post. I immediately reached out to her on my personal account about my love for her books and sent her a picture of Barrett.

Of course, she responded to those also, and I was overjoyed. A small interaction, but one that would stay with me. Little did I know it would not end there. Last September, I had the privilege of being honored at the Congenital Heart Gala in Milwaukee with the Heart Hero of the Year Award. Our Director of Programs, Amy, knowing my love for Nancy Tillman books, reached out to the New York Times best-selling author so that when I walked up to accept the award I would also have a copy of “You’re Here for a Reason” made out to Barrett, complete with a signature.

Ezra on his 2nd Birthday

Giving parents words that can match the feelings they have for their children is Nancy Tillman’s goal in creating these books. Before I even knew about that, I had felt it. I had already decided it would be the book I wanted to gift to other amazing little warriors and their parents. Just one month earlier, I had given it as part of a gift from Barrett to his buddy Ezra on his 2nd birthday. Now, Barrett and Ezra were born roughly two weeks apart, they had all the same newborn clothes, underwent surgery at the same hospital, and were both living with CHD. Ezra’s battle had been particularly rough, but Ezzie’s mom and I liked to call them twins, because even with different defects, different struggles, and ultimately different outcomes…they were brothers on this journey.

This book has a special place on Barrett’s book shelf and in my heart. Each time we read it, I hope he knows how truly amazing and strong he is and how much he is loved.

 

 

 

Note from the Author:

Dear loving parents,

My own grandchild was born with a hole in her heart, so I know much of the struggle that you are going through.  She is well and happy now and that is what I wish for all your precious children.  I wrote You’re Here for a Reason to speak from your heart. I so dearly hope it does.  Your child is miraculous.

Blessings,

Nancy Tillman

 

 

 

 

Jess lives up the North Shore of Minnesota with her husband Nolan and their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. With a background in several aspects of the medical field Jess. Joined PCHA shortly after Barrett’s Birth and subsequent diagnosis. Now a stay at home heart mom she strives to be an active volunteer as an advocate, committee member, and Social Media Coordinator for PCHA.

National Reading Month: It’s My Heart Book

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the first post of our series, the Children’s Heart Foundation shares an overview of the It’s My Heart book, a resource for families affected by CHD. PCHA and the Children’s Heart Foundation are partnering to include the It’s My Heart book in every Conquering CHD Kit. 

 

 

 

Receiving a congenital heart defect (CHD) diagnosis is often an emotional, confusing and overwhelming time.

In 2003, The Children’s Heart Foundation (CHF) – along with a dedicated group of doctors, nurses and parents – set-out to address a dire need noted by patients with CHDs and their loved ones. Although doctors and nurses often explained things well, written materials were either too simple (pamphlets on how the normal heart works) or too complex (medical journals). There was a need for a resource guide with clear writing and illustrations on the most common kinds of heart defects, tests, equipment, surgical procedures and medications.

Published in 2004, It’s My Heart, was written in plain, understandable language. It provides descriptions of the types of CHDs, explanations of the various tests, surgical procedures and treatments for CHDs. This book also contains helpful “before and after” diagrams, a glossary of medical terms, and much, much more.

“Hours after my son was first diagnosed with a CHD at 2 days old, our nurse handed me a copy of It’s My Heart in the hospital. I remember being so scared and confused at that time; it felt as if everything was broken,” said Sally Powers, CHF Executive Board Member & Heart Mom to Sam.

“But that book was one of the first resources I had to help lift me up and move me forward on our journey with CHD,” Sally continues. “And that made me feel hopeful.”

Today, in its’ second edition, It’s My Heart is still a widely used resource book. CHF distributes this book to patients, parents, family members, healthcare professionals and friends of congenital heart defect patients worldwide.

It has always been a high priority for CHF to offer the book free-of-charge. Thanks to support from Medtronic Foundation, Northwestern University Dance Marathon 2011 and various grants, CHF has been able to continue to do so.

“I’ll always be thankful that The Children’s Heart Foundation knew the need for newly diagnosed parents to have that kind of easy-to-understand resource at such a critical time,” Sally said. “My son is 8 now and I still refer to It’s My Heart often.”

To order your free copy of It’s My Heart, please visit: http://weblink.donorperfect.com/Itsmyheartbookorder.
If you have any questions or to place an international order, please contact Rosemary at RWheeler@childrensheartfoundation.org.

 

 

About The Children’s Heart Foundation

The mission of The Children’s Heart Foundation is to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects. For more information, please visit:www.childrensheartfoundation.org. Follow us on Facebook and Twitter.

 

Join fellow advocates in D.C. and email Congress!

As you read this, more than 180 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2017 Congenital Heart Legislative Conference.  They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD). This includes recruitment of co-sponsors for the recently introduced Congenital Heart Futures Reauthorization Act of 2017.

We need you to participate from home!

Help us bring the voice of CHD to Washington by sending an email to your Members of Congress.

It’s as easy as 1, 2, 3!

  1. Find your legislator’s contact information.
    – If this is your first time reaching out, use the contact form on the legislator’s website to send your email.  Visit www.senate.gov or www.house.gov.
    – If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.

2. Copy and paste the email below – adding your own personal story.

3. Send it!

You did it!  If you successfully connect with your legislator or their office, let us know you made contact by completing our online form available here.

This is a very exciting day and a great opportunity to work together to Conquer CHD!

__________

Sample Letter:

Subject: Support Congenital Heart Disease Research

Dear Senator/Congressman [Fill in name here],

I’m writing to urge you to support federal research, surveillance and awareness for congenital heart disease (CHD).

Every 15 minutes, a baby is born with congenital heart disease, the most common birth defect and leading cause of birth defect related infant death.  Even for those who receive successful intervention, it is not a cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.
Continued federal investment is necessary to provide rigorous epidemiological and longitudinal public health surveillance and public health research on infants, children, adolescents and adults to better understand congenital heart disease at every age, improve outcomes and reduce costs.

We urge Congress to:

  • Cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.
  • Provide $7 million to the CDC and $2 billion over FY2017 to the NIH in fiscal year 2018; if including in your appropriations request, sample language is available
  • Join the Congenital Heart Congressional Caucus (for House Members – contact Shayne.woods@mail.house.gov)

If you would like any additional information please contact Amy Basken at abasken@conqueringchd.org.

Thank you-
[Your Name – your city/state]

Congenital Heart Futures Act of 2017 (S.477/H.R.1222)

Congenital Heart Disease Legislation

 

In February, 2017, the Congenital Heart Futures Act Reauthorization Bill was re-introduced in the Senate (S.477) and House (H.R.1222) by legislative champions:

  • Senator Dick Durbin (D-IL)
  • Senator Bob Casey (D-PA)
  • Representative Gus Bilirakis (R-FL)
  • Representative Adam Schiff (D-CA)

Current Cosponsors (Updated 9/06/17)

Senate Cosponsors – Date Cosponsored
  • Whitehouse, Sheldon [D-RI] – 4/7/17
  • Stabenow, Debbie [D-MI] – 4/7/17
  • Klobuchar, Amy [D-MN] – 4/7/17
  • Baldwin, Tammy [D-WI] – 4/7/17

House Cosponsors – Date Cosponsored
  • Pocan, Mark [D-WI] – 3/28/17
  • Connolly, Gerald [D-VA] – 3/28/17
  • Soto, Darren [D-FL] – 3/28/17
  • Evans, Dwight [D-PA] – 3/28/17
  • Holmes-Norton, Eleanor [D-DC] – 3/28/17
  • Murphy, Stephanie [D-FL] – 3/28/17
  • Swalwell, Eric [D-CA] – 3/28/17
  • Loebsack, Dave [D-IA] – 3/28/17
  • Stivers, Steve [R-OH] – 3/28/17
  • Webster, Daniel [R-FL] – 3/28/17
  • McMorris-Rodgers, Kathy [R-WA] – 3/28/17
  • Abraham, Ralph [R-LA] – 3/28/17
  • Guthrie, Brett [R-KY] – 3/28/17
  • Bost, Mike [R-IL] – 3/28/17
  • Mullin, Markwayne [R-OK] – 3/28/17
  • Nolan, Richard [D-MN] – 3/29/17
  • Fitzpatrick, Brian [R-PA] – 4/3/17
  • Collins, Chris [R-NY] – 4/4/17
  • Velazquez, Nydia [D-NY] – 4/6/17
  • Ros-Lehtinen, Ileana [R-FL] – 4/20/17
  • Sessions, Pete [R-TX] – 5/3/17
  • Griffith, Morgan [R-VA] – 5/19/17
  • Ellison, Keith [D-MN] – 5/23/17
  • Moulton, Seth [D-MA] – 6/26/17
  • Cardenas, Tony [D-CA] – 7/13/17
  • Walberg, Tim [R-MI] – 7/13/17
  • Meehan, Patrick [R-PA] – 9/5/17

Are your legislators on the list?

If not email them, today!!!


Here’s more information about the CHFRA:

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease.  This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.  First re-introduced in 2015, the CHRFA did not get passed during the 2015-2016 Congress.  It was reintroduced in February of 2017 with some changes to the language to help forward movement of the bill, but the basic intent of the legislation is the same.

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

  • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
  • Expanding research into CHD. The bill directs the CDC to continue to build their public health research and surveillance programs. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement a campaign to raise awareness of congenital heart disease. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

Here is the complete text as introduced in the House on 11/5/15. There are differences between how the bill in the House and Senate are written, based on key factors in the political process for each.  This is anticipated to be reconciled later on in the bill passage process.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.

Together, we will CONQUER CHD!


Sample email:

Send an email, today!
Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.senate.gov or www.house.gov
    2. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
    3. If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
  2. Copy and paste the sample email, below, and personalize:
    1. Include your legislator’s name
    2. Add your own personal story where indicated
    3. Sign with your name, city, state and contact info
  3. Send it!

—— SAMPLE EMAIL —–

Dear Senator/Representative XYZ,

As you are working on appropriations requests for FY2018, I urge you to show your support for continued funding of essential congenital heart disease-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention.

Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.

As part of these ongoing public health surveillance and research efforts, the Centers for Disease Control and Prevention recently published key findings that report hospital costs for congenital heart disease exceeded $6 billion in 2013.

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

We urge Congress to cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.
This is important to me because: (ONE-TWO SENTENCES)
Share your story briefly, here.

Odds are, someone you know has been impacted by the most common birth defect.

Join us as together, we are #ConqueringCHD.

Sincerely,
Your Name
Address

#CHDAware – CHD Awareness Week 2017

There are a few key ways to help us raise awareness:

Be a part of our Crowdfunding Campaign!

CHD Aware: Raising Awareness to support our Conquering CHD Kits!

It couldn’t be easier simply click here, or text CHDaware2017 to 71777 to donate or become a fundraiser yourself.

Help us reach our goal of $10,000 to get 400 of our Conquering CHD kits into the hands of those in need. These kits offer critical information and a personal connection for people with CHD of all ages and their families, through individualized care packages.

  • $10 puts our canvas bag into the hands of a parent who just learned of their child’s diagnosis
  • $25 allows us to provide a complete kit of educational materials and comfort items to a family whose child is in the hospital
  • $50 helps us educate 5 medical providers about the needs of patients with CHD and their families

Become a fundraiser yourself – post to FB, text your friends, send an email.  All the tools you need are right there on your phone! Any fundraiser who raises over $100 dollars will receive a free PCHA Conquering CHD t-shirt. That’s just 10 friends donating $10!!

You can even share this graphic to engage your friends and family:


Be a part of our Social Media Campaign!

#CHDaware: Raising awareness of CHD

February 7-14 is Congenital Heart Disease Awareness Week. What are you going to do to spread the word about the most common birth defect?

Several of the Pediatric Congenital Heart Association programs help educate parents, physicians, and lawmakers in turn spreading awareness all year long.

However, during the week of February 7-14, the entire community comes together to help others understand how common birth defects are,  the need for research, and access to quality care.

We have created a series of social media graphics that you can use to help us reach those outside of our community. Share them, tweet them, pin them, make them your profile pic.

Make it personal – add details about your story, your experience.  Include a message about the importance of research funding or encourage others to advocate.

We can do the work for you – guide them to our media pages.  Ask them to like or follow us.  We’ll make sure they STAY engaged!  Click on an icon to find us:

Facebook twitter-button linkedin iglogocolor

Where are the graphics?

During CHD Awareness Week, we will post a new graphic each day for you to share, tweet, pin…

Here’s a page banner to get you started!

 


Join our Booster Campaign – Buy a t-shirt!

#CHDaware: Raise awareness buy wearing our Heart Infographic!
Check out our booster and get your shirt, today!  Shirts will be delivered 2-3 weeks AFTER CHD Awareness Week, so you can spread awareness all year long!!

Action Alert – Educate Congress About CHD!

It’s Time to Educate the New Congress about CHD!

A new Congress not only brings new lawmakers to Washington D.C. but a whole host of new staff members, as well.  Many of these folks have only a little knowledge of CHD, at best. With the current conversation about our nation’s healthcare system, it is important that they have at least a basic understanding of this common and costly disease.

Please take this opportunity to educate those new to their offices, and refresh the minds of those who’ve been around for a while.

Just last week, the CDC published great new information about healthcare costs related to birth defects indicating that hospital costs for congenital heart disease exceeded $6 billion in 2013, which should also be of interest to your lawmakers.

Sending an email is simple!!

  1. Find your legislator’s contact information.

 a) Visit senate.gov or house.gov
b) If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
c) If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.

2. Copy and paste the paragraph below and personalize

a) Include your legislator’s name
b) Add your own personal story where indicated
c) Sign with your name, city, state and contact info

3) Send it!

—— EXAMPLE——-

Dear Congressman/Senator [name],

In light of the current conversation about our nation’s healthcare system, we wanted to take this opportunity to highlight a particularly vulnerable population and share with you a recent CDC publication.

Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.

In fact, last week, the Centers for Disease Control and Prevention published key findings that report that hospital costs for congenital heart disease exceeded $6 billion in 2013. (https://www.cdc.gov/ncbddd/birthdefects/features/kf-hospital-stays-costs-birthdefects-2013.html)

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

We urge you to

  • protect affordable access to health care for this population
  • support robust research and surveillance to help understand the natural history of CHD and related healthcare utilization to improve outcomes and value, reducing overall and individual health care costs

The high cost of CHD has impacted my life: [ONE-TWO SENTENCES]

Ex: My husband owns his own small business and we reached our $10,000 insurance deductible due to the medical care Nicholas needs to make sure his heart isn’t getting any sicker, and instead he can continue to be an accelerated middle-school student with dreams of being an engineer and owning his own business.

Someone you know has been impacted by the most common birth defect and the high price tag associated with it.

Join us as together, we are #ConqueringCHD

Sincerely,
Your Name
Address

Caleb Sams

After what appeared to be a picture perfect pregnancy, we were so excited to head to the hospital for our first child, Caleb, to be born.  This day, which began with excitement and joy, would turn into a roller coaster of emotions.

After hours of labor, it was apparent that Caleb was in trouble. His heart rate kept dropping.  Finally his heart rate dropped and would not come back up.  I was rushed back to do an emergency cesarean. When he was born, Caleb’s oxygen saturation never went above the 60s. A normal person’s oxygen saturation is usually above 95.  I kept asking to see him and the nurses kept replying, “we just need to pink him up a little.”  As naive new parents we accepted this explanation.  However when they finally showed him to me, they told us something was wrong and he would need to be taken back to the special care unit.  After a couple of hours of trying to diagnose the problem, it became clear the complication was related to Caleb’s heart and he would need to be transferred to Cincinnati Children’s Hospital.

Caleb was brought to me in an incubator where I was finally able to touch his hands and feet.  While I tried desperately to soak in these brief moments with him, the transfer team explained to us that something was wrong with his heart and that he would require open heart surgery most likely within the first week of his life.  My husband then went with our son, while I had to remain at the birthing hospital.  At Children’s Hospital they diagnosed Caleb with a Congenital Heart Defect called Transposition of the Great Arteries.

Only three days later our sweet newborn son had open heart surgery to save his life.  Kissing our son and sending into an operating room with doctors and nurses we had only just met the in the last couple days was one of the most excruciating moments of our lives.  After hours and hours the surgery was finally complete.  Caleb did well in the surgery and recovered quickly with very few complications.  

Looking at our son now still amazes us sometimes.  He has needed some extra help in areas because of developmental delay and he does have a couple complications with his heart that his cardiologist is monitoring.  But over all Caleb is a typical little boy.  He plays basketball, loves playing outside, and can tell you anything you want to know about his video games.  Our miracle boy fills our lives with joy and laughter.  He has changed our lives forever and reminds us every day to focus on what is truly important.

Congenital Heart Network

The Pediatric Congenital Heart Association (PCHA) is thrilled to announce the creation of our newest program: the Congenital Heart Network.

As we continue to build upon our mission to Conquer Congenital Heart Disease, we recognize the importance of meeting the needs of patients with congenital heart disease (CHD) and their families every step of the way along their journey. Expanding our programming from national activities to local ones is a critical next step. The Congenital Heart Network aims to bring patients with CHD and their families together to provide hope and support to every member of this ever-growing community across the country.

One of the Pediatric Congenital Heart Association’s strategic goals is to develop the foundation for a single congenital heart disease organization to meet the comprehensive needs of those impacted by CHD.

The Congenital Heart Network is the first step toward accomplishing this goal.  The Network will meet the many needs of the CHD community through a single, larger organization.  This program provides new collaborations, significant strength in numbers, and an infrastructure that enhances our ability to improve the lives of those living with CHD.

In addition to virtual, peer-to-peer support communities, the Network will consist of state-based chapters empowered to execute local programming providing education and support directly to CHD patients and their families.

We have been working with a team of committed volunteers with extensive experience in running and managing a national peer support network and look forward to a staged roll-out of this new important program.  As the program continues to grow, I encourage you to communicate with your local support programs to assess whether participation in the Congenital Heart Network would be advantageous to them as we offer some of the following benefits:

  • Provision of tax-exempt status under a group 501(c)(3) exemption;
  • Support in incorporation and annual filing requirements
  • Web page dedicated to information about the Network and contacts;
  • Employment of staff dedicated to the Congenital Heart Network;
  • Educational webinars to assist with management of groups;
  • Access to congenital heart related educational materials to disseminate to local network participants.
  • Additional program materials such as care package essentials

 

We are very excited about this tremendous opportunity to grow the voice of congenital heart disease while better meeting the needs of individuals with CHD and their families.  Together, we are Conquering CHD!!!!

Stay tuned for more information about how individuals can join the Network as we build our peer-to-peer structure.

Interested in learning more about forming a Chapter in your state?

Please contact: Amy Basken – Director of Programs: abasken@conqueringchd.org

or

Melanie Toth – Director:  mtoth@conqueringchd.org;

Megan Setzer – Director: msetzer@conqueringchd.org

 

PCHA 2017 Policy Update

 

Looking ahead to 2017, the Pediatric Congenital Heart Association has spent the last several months developing strategic policy goals that address the needs of the congenital heart disease community, including research, data collection and public health policy.  In the next weeks, along with finalizing these goals, we will be meeting with organizational partners, our legislative champions and advocates, like you, to establish next steps to address these key policy issues in the coming year.

 

 

Our stories matter.  What you can do now:

1) Begin to build relationships: Identify who represents you and learn about them.  Listen to what is important to them.

2) Open the lines of communication – Collect your lawmakers’ email addresses, phone number and contact information for the district office near you.  For newly elected officials, this may not be available until January; however, many have social media contacts via FB and twitter.

3) Share your story.  Introduce them to your world of chronic illness.  Let them know that health issues matter to you.

Completing these steps will lay the ground work for effective advocacy in the months ahead.

We, also, urge you to consider attending the Congenital Heart Legislative Conference in Washington D.C. on March 1-2.  Here you will:

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

As always, we are inspired by the strength of the millions of people impacted by congenital heart disease.  By coming together, we are conquering CHD!

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

Your story matters.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to helping people with congenital heart defect in their lives. With this partnership, we’ll be able to help even more people.

Here’s an example of the great stories you will find on The Mighty: https://themighty.com/2016/07/congenital-heart-defect-man-makes-promise-to-be-an-advocate/

We encourage you to submit a story to The Mighty and make your voice heard!