#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!!

Happy Birthday PCHA – #ConqueringCHD Week!

There are so many ways to help us recognize our 3rd Birthday!


1) Use your Social Media talents as we work to reach 250,000 people!

It’s your week to shine as a PCHA #ConqueringCHD social media ambassador!

In February, our education efforts had a total weekly reach of 210,000 people for our #CHDAware campaign.  Wow- that is a huge impact!  Let’s do it, again!!!

Join the Social Media Blitz 

During the week of August 21-27 help us cover social media with facts and faces. Like, share, comment and tag using the hashtag #ConqueringCHD.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by sharing our memes throughout the week.

Make it personal – Using the hashtag #ConqueringCHD, share stories and photos about those in your lives who are Conquering CHD. Tag us on Facebook, Twitter or Instagram. Whether it is conquering CHD at the doctors office, at school, on the playing field, welcoming a rainbow baby, helping others, advocating, or celebrating a birthday of your own, during #ConqueringCHD week, August 21-27, we want to celebrate with you!!

Invite others – we can do the work for you – simply 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

2) Help us raise $10,000

It couldn’t be easier –  simply click here or text CHD2016 to 71777 to donate or become a fundraiser yourself.

Give a gift that really makes a difference:

Help us reach our goal of $10,000 to support vital programs including helping patients talk to their doctors, making sure kids get great care their whole life, and fighting for more federal research funding.

  • $25 allows us to reach 1000 people through social media
  • $50 helps 10 newly diagnosed families through our Guided Questions program
  • $500 sponsors one key hospital site visit

Join in on the fun and earn great party favors:

Become a fundraiser yourself – simply ask 10 friends to give $10! All the tools you need are right there on your phone!  As a fundraiser, you will receive regular emails to provide inspiration and support in your efforts.  When you reach your goals, we will send you party favors:

  • Raise $100 and receive a free PCHA “Conquering CHD” t-shirt
  • Raise $500 and receive a t-shirt and PCHA Canvas tote bag
  • Raise $1000 and receive a t-shirt, tote bag, and exclusive PCHA baseball cap!

Need inspiration?  Check out these ideas:

  1. Simple Facebook Post: our experienced fundraisers said that with a simple post on Facebook and one email to their families and friends, it doesn’t take long to reach $100!
  2. Night Out for CHD: Mary Adair from San Antonio, Texas has arranged for several charitable nights out at local restaurants where proceeds earned during a specific time period benefit PCHA.
  3. Lemonade Stand: Nicholas Basken from Wisconsin is planning a lemonade stand on the corner, he will also invite friends and family to participate through the Virtual Party fundraising platform (above).
  4. Check out our Fundraising Toolkit for more fun and easy ideas!! Any funds raised off-line can be added to your online fundraising total.  Want to learn more, email advocacy@conqueringchd.org

3) Write your Members of Congress

AA - Futures ActTell them it is #ConqueringCHD Week.  Ask them to join you in #ConqueringCHD by becoming cosponsor of the Congenital Heart Futures Reauthorization Act (CHFRA).  Click here to learn more and see if your lawmaker has already signed-on.  If they have, be sure to thank them for #ConqueringCHD!!


4) Get the Swag:

Tori - Bat KidCheck out our online store for #ConqueringCHD apparel and buttons.  Don’t miss our great strawberry smelling pens, too!!


Click to sign-up and saveAnd don’t forget to Put Safety First and sign-up for the Rapid SOS.  You can learn more and sign-up, here.


Social Media Log 2016The party goes on after #ConqueringCHD Week.  Consider joining us for our Second Annual Congenital Heart Gala on September 24th, 2016 at the Milwaukee Art Museum, Milwaukee Wisconsin.


Finally, Celebrate all you are doing as, together, we are #ConqueringCHD!

Knoweldge. A Voice. Hope

#CHDAware – CHD Awareness Week 2016

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

 

Be a part of our Crowdfunding Campaign!

CHD Aware: Raising awareness to empower patients and families with CHD.

It couldn’t be easier simply text CHDaware to 71777 to donate or become a fundraiser yourself.

Help us reach our goal of $10,000 to support our Patient Empowerment Program

  • $25 allows us to reach 1000 people through social media
  • $50 supports 10 newly diagnosed families through our guided questions program
  • $500 sponsors one hospital site visit

Become a fundraiser yourself – simply ask 10 friends to give $10! 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.

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

Text to donate

Be a part of our Social Media Campaign!

#CHDaware: Raising awareness of CHD

February 7-24 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…

But if you can’t wait that long, here they are:

Awareness Week 1in100Costly Most Common Birth Defect Stay in care Together, we will Conquer CHD Donate

 

Costly Need intervention

Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)

2014-01-30 15.12.14Congenital Heart Disease Legislation

In November, 2015, the Congenital Heart Futures Act Reauthorization Bill was introduced in the Senate (S.2248) and House (H.R.3952) 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 3/8/16)

Senate Cosponsors

Sessions, Jefferson “Jeff” [R-AL] – (joined Nov 16, 2015)
Bennet, Michael [D-CO] – (joined Nov 18, 2015)
Cochran, Thad [R-MS] – (joined Jan 19, 2016)
Donnelly, Joe [D-IN] – (joined Feb 8, 2016)
Kirk, Mark [R-IL] – (joined Feb 11, 2016)
Baldwin, Tammy [D-WI] – (joined Mar 7, 2016)

House Cosponsors

Norton, Eleanor [D-DC0] – (joined Nov 5, 2015)
McGovern, James “Jim” [D-MA2] – (joined Nov 18, 2015)
Swalwell, Eric [D-CA15] – (joined Dec 2, 2015)
Blackburn, Marsha [R-TN7] – (joined Dec 11, 2015)
Bucshon, Larry [R-IN8] – (joined Dec 11, 2015)
Griffith, Morgan [R-VA9] – (joined Dec 17, 2015)
Loebsack, David [D-IA2] – (joined Dec 18, 2015)
Nolan, Richard [D-MN8] – (joined Dec 18, 2015)
Lance, Leonard [R-NJ7] – (joined Jan 8, 2016)
Walberg, Tim [R-MI7] – (joined Jan 8, 2016)
Guthrie, Brett [R-KY2] – (joined Feb 1, 2016)
Collins, Chris [R-NY27] – (joined Feb 2, 2016)
McMorris Rodgers, Cathy [R-WA5] – (joined Feb 2, 2016)
Bost, Mike [R-IL12] – (joined Feb 3, 2016)
Lewis, John [D-GA5] – (joined Feb 3, 2016)
Webster, Daniel [R-FL10] – (joined Feb 4, 2016)
Abraham, Ralph [R-LA5] – (joined Feb 9, 2016)
Grothman, Glenn [R-WI6] – (joined Feb 10, 2016)
Pocan, Mark [D-WI2] – (joined Feb 10, 2016)
Ellmers, Renee [R-NC2] – (joined Feb 12, 2016)
Ellison, Keith [D-MN5] – (joined Feb 24, 2016)
Hahn, Janice [D-CA44] – (joined Feb 24, 2016)
Brooks, Susan [R-IN5] – (joined Mar 2, 2016)
Fitzpatrick, Michael [R-PA8] – (joined Mar 21, 2016)
Sessions, Pete [R-TX32] – (joined Apr 13, 2016)
Connolly, Gerald [D-VA11] – (joined Jul 5, 2016)

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.

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 plan, develop and implement a cohort study that would improve understanding of CHD across the lifespan. 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 awareness, outreach and education campaign directed at CHD across the lifespan. 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.

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.

Also, consider bringing your voice to Washington D.C. as we advocate for this legislation in February!

Together, we will CONQUER CHD!

“I am Conquering CHD” Fundraising Campaign

Looking for a way to give back to the congenital heart community?   Want to do something that will make a difference for others with CHD?

Join our “I am Conquering CHD” Fundraising Campaign, benefiting the Pediatric Congenital Heart Association.

Fundraising Meme

August 21-23, 2015 volunteers from across the country will be celebrating PCHA’s second anniversary and joining together participating in fundraising activities to help conquer the most common birth defect.

Big or small, each activity helps support the vital education, research and advocacy programs of PCHA.

We have a lot of great tools to help you fund raise:

  • Advocacy Toolkit – Check out this comprehensive online guide packed full with ideas and strategies to make any fundraising activity successful
  • Personal Fundraising Pages – These pages make it easy to collect donations from friends and family near and far!
  • Fundraiser Starter Kit – Once you’ve registered your fundraiser, this kit provides you with all the files and resources you need to promote your event
  • Fundraising Network – Share ideas and learn from others who are interested in fundraising, too!
  • PCHA Online Store – Visit our store, today! Purchase fun items to raise awareness and promote PCHA during your fundraising activity. You don’t want to miss our great PCHA t-shirts, popular buttons, and unforgettable strawberry scented pens!

Start now, by checking out our Fundraising Toolkit, then email advocacy@conqueringchd.org to get your fundraiser registered and on the list, today!

“I am Conquering CHD” fundraising Activities: (last updated July 21)
Aug 21 – Toast for Tiny Hearts; Evanston, Il
Aug 22 – Purse Purge Coin Drive; Denver, CO
Aug 22 – Lunch for Little Hearts; Manitowoc, WI
Aug 22 – Purse Purge Coin Drive; Duluth, MN
Aug 23 – Mini Dance-a-thon, Madison; WI
Aug 21-23 – “I am the Change” Coin Drive; Denver, CO

 

Unexpected Hero

Special thanks to Mark Gentle who agreed to share his son’s story with us. The following photo was also shared with permission.

Carter

He was scarred.  He was scared.  And now, he’s a superhero.

Carter recently underwent open heart surgery to repair a problem with his heart he has had since he was born. The surgery left a large scar down the front of Carter’s chest, along the center of his ribcage.   When the bandages were removed, Carter was devastated by the marks on his chest. So, dad posted a picture of his son, asking friends and family to show their love and support for Carter and his new look.

Carter was born with the most common birth defect.  1 in 100 babies are born with congenital heart disease (CHD).  One third of those born with CHD will require life-saving intervention or heart surgery at least once during childhood.  That’s thousands of children, each year.

Carter was concerned that he was going to look different.  What he didn’t know was that his difference was going to make such a positive impact.  In a few short days, Carter’s picture has received more than 1 Million likes and more than 75,000 shares.

Carter, you are not alone in this journey.  Thank you for sharing your struggles and making one of the largest impacts in CHD awareness history!

The Original Post Can Be Found Here. Please visit, like and share!

 

January is Birth Defects Prevention Month

BD Month Image

Birth defects are common, costly and critical. Every 4½ minutes, a baby is born with a major birth defect.  Professionals, community groups and the public can act to reduce the risk of certain birth defects, detect those that occur as soon as possible and prevent secondary complications.

Heart defects are the most common birth defect and leading cause of birth defect related infant death.  While, most heart defects are not preventable, we encourage women to make a PACT for their own health and the family they may have one day.   All women, including teens, can lower their risk of having a baby born with a birth defect by following some basic health guidelines throughout their reproductive years.

Plan ahead

  • Get as healthy as you can before you get pregnant
  • Get 400 micrograms (mcg) of folic acid every day

Avoid harmful substances

  • Avoid drinking alcohol and smoking
  • Be careful with harmful exposures at work and home

Choose a healthy lifestyle

  • Eat a healthy diet that includes fruits, vegetables, whole grains, low fat dairy, lean proteins, and healthy fats and oils
  • Be physically active
  • Work to get medical conditions like diabetes under control

Talk to your doctor

  • Get a medical checkup
  • Discuss all medications, both prescription and over-the-counter
  • Talk about your family history

Women and their loved ones can participate in their PACT and take these important preventive steps that can lead to a reduction in the number of birth defects.

Walking to Washington

Walking to Washington

Miles Walked: 610/860  

Donations Earned: $500.00

Join me as I ‘walk the walk’ in preparation to ‘talk the talk.’  I am walking from the Pediatric Congenital Heart Association National Office in Madison, WI ‘arriving’ in Washington D.C. just in time for the Congenital Heart Legislative Conference February 25-26, 2015.

Follow my progress here.

Donate Now

Just a few weeks left, a few hundred miles and a few hundred dollars.

Help me make it to the finish line and reach my goal of 850 miles/$850!

By clicking the button above you can donate by credit card or virtual check.  If you would prefer, you may mail a sponsorship check to PCHA,14 Ellis Potter Court, Suite 100, Madison, WI 53711.

Why Donate?

Every 15 minutes a baby is born with a heart defect.  Every 15 minutes, a new challenge is thrust upon a family. There is no cure. If a baby is lucky enough to survive, they are faced with the life long consequences of congenital heart disease.

During one of those 15 minutes, our world was forever changed by congenital heart defects with the birth of our youngest son.

I am walking to help Conquer Congenital Heart Disease.  I want to ensure that all children, especially my son, not only survive, but thrive to live a long, productive life with congenital heart disease.

I am also walking to support the Pediatric Congenital Heart Association.  In just one short year, it has demonstrated a profound impact uniting both the medical and the patient communities to join in the fight to Conquer CHD.

The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.”  It is founded on the key purpose to be the resounding voice of the pediatric patient population through collaboration in education, research and advocacy.  PCHA works to reduce the impact of congenital heart disease while striving to realize a world free from it.

Large or small, any donation will benefit children and adults with heart defects.

Thanks!

Amy Basken – Founder and Director of Programs at PCHA

Donate Now

Your Donation = The Perfect Gift!

Help us Celebrate our Birthday!

Birthday donate button 2

Sometimes it is really hard to pick out the perfect present.  That is why gift cards have become so popular.

Since it is our birthday, we wanted to make gift giving as easy as possible.  In fact your gift does more than simply make us smile:

Your gift supports activities such as:

  • Research Matters – building compassion and engagement in research
  • Quality Project – uniting medical professionals including surgeons, cardiologists and nurses, leaders in quality, with parents – working together to empower parents and patients
  • Legislative Conference – Learning and leading by bringing your stories to Washington D.C. to educate lawmakers about federal research

We need your help during our Birthday Month to reach our goal of raising $10,000 to support these important projects.

This is one birthday gift that will truly make a difference!

Donate, today!

“As we work to create light for others,