March 1, 2014

We’ve Moved!!!

Find us at: http://www.conqueringchd.org/blog/

tortoises loading a house into a house into a van

This blog site will no longer be updated, however, you will now be able to find the same great content on the Pediatric Congenital Heart Association blog at www.conqueringchd.org.  Check it out – you will find personal stories and anecdotes, information about advocacy, education and research, and so much more!

 

February 8, 2014

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!

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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.

February 7, 2014

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!

February 4, 2014

100’s of Hearts – Donate today!

100's of Hearts - Donate today!

We have added a few more hearts! Who does your heart belong to this Valentine’s Day? Honor them by supporting education, research and advocacy through the Pediatric Congenital Heart Association. Your donation will help us empower CHD survivors and their families to advocate and bring much needed awareness to Washington D.C.!

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January 29, 2014

Action Alert – Thank your members of Congress

PCHA Leadership is heading to Washington D.C. today!  We have 8 different meetings with lawmakers and partner organizations to talk about congenital heart defects.  In 2014, we will continue to work to increase funding for data collection and surveillance, promote research, and increase awareness and compassion among our lawmakers.

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We need your help:
Last night, I made lasagna. From scratch.  While layering the noodles, messy filling and cheese, I was also helping to locate a missing book, finish a math assignment, and refereeing what appeared to be a wrestling match.

Needless to say, when it came time to sit down for dinner, I was exhausted.  As I grabbed my fork to eat the still messy dish (did I mention I forgot to add the eggs?), the angels sang.  All three of my children chimed in unison, “thanks for cooking, mom.”  Who cares if they were prompted, it was still music to my ears and softened my heart.

I can only imagine that life in Washington DC for our leaders is as hectic as my life at home.  I’m certain they would appreciate a thank you, too.

We have much to thank them for:

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  • Thank you for making research for congenital heart defects a priority
  • Thank you for increasing the funding for congenital heart research at the CDC from $2M to $2.9M
  • This means a lot to me because: (insert your story here in 1-2 sentences.)

Writing them a quick note is simple:

1) Look up your members at House.gov and Senate.gov
2) Complete their online contact form. Make sure to include that you are an advocate for the Pediatric Congenital Heart Association!
3) Let us know you took action so we can acknowledge your effort! Emailadvocacy@conqueringchd.org

This easy action is the first step in building a lasting and influential relationship with your lawmakers.

Together, we will make a difference!!

January 27, 2014

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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January 20, 2014

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!

 

January 17, 2014

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

January 14, 2014

Today is your day, what will you do?

A thought provoking and sweet call to action!
(Honestly, it makes me want to make a heart out of Jelly Beans to hang on my wall!)

January 13, 2014

4 things to do during National Birth Defects Prevention Month

Congenital heart defects are the most common birth defect.  Period.

Part of Conquering CHD means working to make sure that they don’t happen in the first place.

Let’s support the CDC and the National Birth Defect Prevention Network’s efforts to prevent birth defects.

Birth Defects Infographic

Here’s what you can do!

1) National Birth Defects Prevention Month Tweet-Up– #1in33

Promote National Birth Defects Prevention Month all month long on Twitter!  Follow NCBDDD director, Dr. Coleen Boyle (@DrBoyleCDC), who will share a fact each day during January to raise awareness about birth defects. Each daily fact will be marked by the hashtag: #1in33 (a reference to the prevalence of birth defects). Re-tweet the facts and add your own, using the hashtag #1in33.

Each year, total hospital costs for U.S. children and adults with birth defects exceed $2.6 billion. To learn more visit www.cdc.gov/birthdefects

2) Social Media Buttons

Post one of these buttons on your Web site, blog, or social networking site (e.g., Facebook page) to increase awareness of birth defects.

3) Family Stories & Photos (Flickr)

View stories and photos of families affected by birth defects in CDC’s Flickr album. There several CHD stories!!

4) National Birth Defects Prevention Network Educational & Promotional Materials

The National Birth Defects Prevention Network (NBDPN) has educational and promotional materials available via their website. In 2013, the NBDPN Parents Advisory Group created a special public service announcement to raise awareness about birth defects, which was launched from www.endbirthdefects.org.  The PSA is available for downloading.  Feel free to use these materials to promote birth defects awareness and prevention.

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