ACTION ALERT: Congenital Heart Futures Reauthorization Act is moving forward – we need your help!

ACTION ALERT:

Congenital Heart Futures Reauthorization Act is moving forward – we need your help!

The Congenital Heart Futures Reauthorization Act passed the House, this past February and is now making its way through the legislative process in the Senate.

We are thrilled to report that this Wednesday, July 25, the Senate Health, Education, Labor and Pensions (HELP) will hold a mark-up of the CHFRA. This is an essential step to move the bill out of Committee toward becoming a law.

The Congenital Heart Futures Reauthorization Act will authorize the CDC and NIH to build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD.  More specifically, the bill will:

  • Expand the CDC’s longitudinal surveillance of individuals with CHDs across the lifespan, including regarding healthcare utilization and demographics through a cohort study, leading to evidence-based practices and guidelines for CHDs.
  • Authorize an awareness, outreach and education campaign at CDC, which will help inform the children, adolescents and adults with CHDs who are unaware of their high risk of additional complications as they age about the need to seek and maintain lifelong, specialized care.
  • Assess the research needs and existing projects related to CHDs across the lifespan at NIH, which will allow us to better understand the current state of biomedical research and what gaps may exist.  

 

ACT NOW:

This is the perfect time to reach out to your Members of Congress and remind them to support S.477 (The Congenital Heart Futures Reauthorization Act). Email, call, tweet, connect with them today!

We are also specifically targeting the offices of those who are on the HELP Committee, participating in Wednesday’s mark-up.  If you live in the following states, please call or email your legislator, today!! See below for a complete list.

  1. Find your Senators: www.Senate.gov
  2. To send a quick tweet: Calling on @SENATORNAME to support S.477 in upcoming mark-up on Wednesday. It matters to me and 2.4M others with #CHD. #Conqueringchd #CHD4Life
  3. Call or email:
    1. If you are calling be sure to include the following:
      1. My name is __________ and I’m calling from __________.
      2. I’m asking the Senator to support S.477, the Congenital Heart Futures Reauthorization Act during the mark-up process, this Wednesday, July 25
      3. Congenital Heart Disease is important to me because ___________
      4. This legislation will help build upon existing work by the NIH and CDC, build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD.  
    2. If emailing:

Dear Senator _____,

I’m writing from ___________.  As your constituent, I am asking you to support S.477, The Congenital Futures Reauthorization Act  during the mark-up process, this Wednesday, July 25.

This important legislation will authorize the CDC and NIH to build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD.  

This matters to me because ____________.

Thank you for your time and consideration.

Sincerely,

Name

 

Senate Help Committee Members:

 

5 Ways Heart Families Beat the Summer Heat

The summertime sunshine can be a welcome treat after a long winter, but it can also be dangerous. Many people with complex CHD have difficulty tolerating the summer heat. PCHA recently asked the CHD Community, families, and patients to share what they do to beat the heat. This is what they had to say!

 

1. Hydrate! Hydrate! Hydrate!

Our bodies are made up of approximately 70 percent water. Water has many important functions in the body, including; regulating your body’s temperature, digesting food, and excreting waste. Children are at a greater risk of dehydration than adults. This is because in relation to their size, children have a larger proportion of their skin available to lose sweat and be exposed to heat. Additionally, children don’t always recognize that they’re thirsty, and if they’re not encouraged and reminded may forget to drink. Add Congenital Heart Disease into the equation and dehydration can pose an even greater risk.

Here are a few tips to help your kids stay hydrated in the summer sun:

  • Pack a water bottle to have handy whenever you go out. You can even try having a couple of frozen water bottles in the freezer ready to grab and go!
  • Encourage your child to drink water before, during, and after physical activity
  • Always offer and encourage water with meals and snacks, even if they don’t like it!

Tricks for when your kids don’t like or just don’t want water

  • Try adding slices of fruits such as lemon or orange to water, for variety and flavor.
  • Let your kids choose their own cup or bottle to drink from.
  • Be a role model! Make a point of drinking water with your kids.
  • Experiment with ice cube trays; kids can have fun freezing water into a variety of shapes and adding those ice-cubes to their drinks. Check out these great choices: Under the Sea, Star Wars, Stars & Hearts!

 

2. Indoor Activities

Depending on where you live, summertime temperatures can average anywhere between “Oh boy, I’m starting to melt a little bit out here,” to “Someone dump a bucket of ice water on me right now.” The anticipation for the last bit of snow to melt and the warmth that summer brings can’t arrive fast enough but, for some, it can be the moment you began feeling bad about not wanting to leave the comfort of your cool home for the hot outdoors. But despite the pressure to get out and have fun in the sun, you shouldn’t feel bad about staying inside with your heart warrior on those hot days – especially when their causing your cardiac kid serious discomfort.

 

3. Enjoy a Cool Treat

What’s summertime without ice cream? Clearly we know why July, the peak of summer, is National Ice Cream Month. Whether you’re rolling through the Dairy Queen Drive-thru, passing out popsicles by the pool, or busting out a pint of Ben & Jerry’s after the kids go to bed there are a lot of sweet treats that seem to take the edge off of a hot day. We followed up our “how do you beat the heat” heart poll question by asking our followers what their favorite flavor of ice cream was and who knew there were so many different flavors of Ice cream out there!?

Here are the top 5 flavors heart warriors and their parents prefer:

 

#1 Mint Chocolate Chip

#2 Chocolate

#3 Cookie Dough

#4 Peppermint

#5 Moose Tracks

 

4. Take a Dip

Making a splash in the pool or at the beach (or relaxing on a raft) is at the top of just about everyone’s favorite summertime activity list! It’s a great way to stay cool, and get everyone out of the house. Though it’s important to keep in mind each of your swimmers’ strength and that harmful rays can still do damage, even in the water. Be sure to tote the waterproof sunscreen when you’re hitting the water!

5. Soak up the Summer

Some of us just love watching those temperatures rise, soaking up the sun, and feeling that warmth on our faces. It’s important to remember moderation, too much sun can make you sick too! Encourage your Heart Warriors to learn their own limits, while still having fun! Remember to take breaks, find a shaded area if you can’t go inside, plan your outing when the sun’s not at it’s hottest, use a cooling sport cloth, and drink plenty of water!

You’re not alone in looking for fun ways to beat the heat. Love it or loathe it, summer is sticking around, so whatever you do be safe and enjoy it!

 

*Please note the information in this post is not meant to be a substitute for medical advice.

Action Alert: FY2019 Appropriations

Email your Senators, today, and ask her or him to sign the FY 2019 Appropriations Letter being circulated by CHD legislative champions Senator Durbin and Senator Grassley in support of congenital heart disease-related public health research and surveillance initiatives at the CDC.

Each year, we need to make sure that Congress continues to fund the congenital heart disease public health research and data collection at the National Center for Birth Defect and Developmental Disabilities (NCBDDD), with-in the Centers for Disease Control and Prevention (CDC). This budget process is called Appropriations.  Senators Durbin and Grassley have drafted a letter to the Appropriations Committee asking them to support funding for the CDC program to better understand and treat the lifelong needs of those living with congenital heart disease.  They are seeking as many Senators’ signatures as possible.

Email, call, or tweet your Senator or their health staff and ask them to reach out to Max Kanner (Max_Kanner@durbin.senate.gov), today!

Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.senate.gov
    2. If this is your first time reaching out, use the contact form on the Senator’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 xyz,

As you are working on appropriations requests for FY2019, 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.

Please show your support by signing the Appropriations Letter being circulated by Senators Durbin and Grassley.  To add your name, please contact Max Kanner with Durbin (Max_Kanner@durbin.senate.gov)
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

 

Brie Harrison

It was the strangest thing. Something I can’t fully explain. My entire pregnancy I had a feeling that something was different. Leading up to the 20 week scan I kept saying to my husband “I’m scared. What if something’s wrong!?! I feel like somethings wrong!”.  Call it premonition, call it mother’s instinct, or simply coincidence but I was absolutely right. The sonogram tech spent 2 hours looking at my baby when finally a doctor came in and delivered the news “there’s something wrong with your baby girl’s heart.”.  We were terrified. We had no idea what this meant for our baby girl, our baby girl that we had so many hopes and dreams for. We already had a beautiful son and we were so excited to have the perfect family of four. This news was life changing.

Two days later we had an emergency appointment with a fetal cardiologist where it was confirmed that our daughter had a complex and rare heart defect, truncus arteriosus. We decided right then and there we would do everything possible to get our baby girl the best care in the country. A couple months later we uprooted our life in Florida and moved back home to our families in Maryland. We wanted our child to have all her care and treatment at The Children’s Hospital of Philadelphia and we felt a move was necessary. That’s was decision we will never regret.

I was induced and gave birth to Brie on July 27th, 2017 at 37 weeks. She weighed 5 pounds 8 oz. Brie looked perfect. It was hard to believe without surgery our little girl wouldn’t make it more than a few weeks. We are so proud of our heart warrior. Brie has been through more in her short life than most people will experience in a lifetime. We would later find out that Brie also has 22q deletion syndrome (also known as DiGeorge syndrome). 22q can have over 180 symptoms and we have no idea what will end up affecting Brie but we do know it’s why Brie has her heart defect. Brie underwent her first open heart surgery at 4 days old, has had three heart catheterizations, had stents put in to her pulmonary arteries and a few weeks ago had her second open heart surgery. We’ve had experiences that are beyond terrifying. We’ve seen our daughter bleed out from a procedure, we’ve seen her turn blue and need to be revived, we’ve had to push that horrid code blue button but she’s pulled through it all. She’s truly our miracle. Brie’s CHD has no cure and will require close monitoring with many, many doctors appointments at CHOP. We know she will need more open heart surgeries and procedures as she grows. Brie’s next open heart surgery is expected in 3-5 years. We know this is just the beginning but we are positive Brie will continue rockin’ this CHD and 22Q journey. Brie has brought hope and inspiration to so many families battling similar battles. My grand plans for her may be slightly different now but I know she has big plans of her own and I know her little stubborn self will make it happen. Life wouldn’t be the same without her, she’s given life a whole new meaning for us. We cherish the moments, celebrate each victory, and we’ve come to realize we still have that “perfect” family of four we always dreamed of.

Jeremy Park

Jeremy was born on December 24, 2012, with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect where one side of the heart didn’t develop. In Jeremy’s case, his left ventricle, mitral valve, aortic valve, and aorta didn’t develop. HLHS requires three open heart surgeries to recreate the anatomy in order to survive.

At 4 days old, he underwent his first open heart surgery called the Norwood. He was in the hospital for 18 days. At 4 ½ months old, he underwent his second open heart surgery called the Bi-Directional Glenn. He was in the hospital for 7 days. He had complications after this surgery that required more testing and a heart catherization. At 2 years and 10 months old he had his final surgery, of the 3-stage palliation, called the Fontan. He was in the hospital for 16 days. He has had many other procedures as well.

Jeremy is 4 years old and is thriving!!  He is happy, full of energy, and his heart function is great!  He loves art, gymnastics, T-ball, and swimming. We know he will have more procedures and surgeries down the road, but we are living life to the fullest!  We are thankful for the support and love that we have gotten from everyone!

Letzer Family

Our story began at Freddie’s 19 week ultrasound.  The sonogram technician kept circling around his heart and said “there’s a problem with his heart anatomy”. We were first told he had Truncus Arteriosus; subsequently we learned his true diagnosis: Tetralogy of Fallot with Pulmonary Atresia with Multiple Aorto-pulmonary Collateral Arteries (MAPCAS). A ruined pregnancy turned into a silent blessing as we had time to research the best medical facilities in the country to cure this defect. After much prayer and research, Children’s Hospital of Philadelphia became the obvious place for our family in order to save Freddie’s life. It was made clear to us that not only would he need his full repair., but additional surgeries would be required during his life to replace his conduit, and address any other repaired that might be required.

 

Freddie was born August 5, 2005, but after 11 days in CHOP’s ICU he was released only to be admitted to Johns Hopkins Hospital 2 weeks later for failure to thrive. A feeding tube was placed in order for him to gain enough weight for his full repair, which took place on December 22 2005, under the expert care of Dr Tom Spray. After 5 ½ hou

 

rs in the OR, including 19 minutes under circulatory arrest, where he was cryogenically frozen, Dr. Spray emerged to utter the best words Melanie and I had ever heard: “he’s fine, everything went well”! It went so well in fact, that the Assisting Surgeon later confided to Melanie and I that for a surgery of this magnitude, it was outcome they had all year.

When Freddie was just over three at a routine follow up a pseudoaneurysm was diagnosed via echocardiogram.  A cardiac catheterization ensued and confirmed a pseudoaneurysm.

Freddie underwent a homograph conduit replacement on October 20, 2008, again under the expert care of Dr Spray at CHOP.  Due to the amazing network of physicians and all staff aat CHOP, we have been blessed that Freddie has had no restrictions of any kind, and in addition to a great scholastic experience to date, he has been able to play recreational soccer, flag football, baseball and basketball.

 

Just recently, Freddie had his 3rd open heart surgery to replace his homograph conduit on February 6, 2018. He did develop a pneumothorax postoperatively and needed a chest tube placed at bed side. Amazingly, he was discharged 74 hours after surgery.

On 10/26/2015 our 3rd child, Nicholas was born also with Tetralogy of Fallot that was diagnosed at a 22 week fetal echocardiogram. Nicholas was born in the SDU at CHOP and became symptomatic of heart failure at 2 weeks of life.  Nicholas was also admitted to Johns Hopkins for failure to thrive. We gave Nicholas fortified breast milk thru the bottle.  He had his full repair at 6 weeks old at CHOP by Dr Spray. He is currently undergoing speech therapy for speech delay.

The House of Representatives is officially #CHDWise – IT PASSED!

Shortly after it’s initial passing into law in 2010, the Pediatric Congenital Heart Association began hosting the Congenital Heart Legislative Conference – in partnership with the Children’s Heart Foundation and The Adult Congenital Heart Association – in efforts to ensure the Congenital Heart Futures Act is renewed in order to meet the needs of the changing CHD community.

In June 2017, the House Committee of Energy and Commerce held a markup on the Congenital Heart Futures Reauthorization Act (CHFRA), H.R. 1222.

Today all that work has paid off and the Congenital Heart Reauthorization Act is one step closer to being put back into law. With a vote of 394 to 7 H.R. Bill 1222 was passed by the House!

This exciting news is a result of hard work, dedication, and brave voices like yours, but our work is not done!  The Congenital Heart Futures Act needs to next make it through the Senate.  Tomorrow when we meet with our Senators we will encourage them to follow the House’s lead.

You can help from home!

Are your Senators on the list of Congenital Heart Reauthorization Act co-sponsors?

If not email them, today!!!

 

Current Cosponsors (Updated 2/25/18)

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

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 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). 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

Join our D.C Advocates and Participate from Home Today!

As you read this, nearly 200 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2018 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. With the passage of the house version of the bill last night

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
    – 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 [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). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office.
  • Provide $7 million in FY2019 to the Center for Disease Control and Prevention’s National Center on Birth Defects and Disabilities to support surveillance and public health research to build upon current activities to better understand the public health impact of congenital heart disease across the lifespan. Provide 36.2 billion for FY2018 and 38.4 billion for FY2019 to the National Institutes of Health to support efforts to develop innovative and cost-effective interventions for those living with Congenital Heart Disease.

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

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

#CHDAware – Heart Month 2018

CHD Awareness Week has come to a close but there are still a few key ways to help us raise awareness through heart month and all year long!


Participate in our Social Media campaign! 

Use your social media talents to shine and join the #CHDAware social media storm

February 7-14, the entire community comes together to help others understand how common congenital heart defects are, the need for research, and access to quality care. At PCHA, our programs serve to educate parents, physicians, and lawmakers spreading awareness all year long, but we love to join in the February Fun as we strive to educate those who may not be as familiar with CHD.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by liking and sharing our statistic infographics. We have a lot to share, this year, so look out for these graphics all month long!

Make it personal – Using the hashtag #CHDAware, add details about your story, your experience, and be sure to Include a message about an aspect of CHD of importance to you. Examples: the need for research funding, advocacy, or support for fellow families. This is all about sharing how Congenital Heart Disease impacts patients and families and how we, together, can turn awareness into action. Don’t forget to tag us on Facebook, Twitter, or Instagram!

Facebook frame – As patients, parents, bereaved families, and providers we are all #CHDAware. Show your support for heart month and CHD Awareness week by adding this effect to your profile picture or video!

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

Facebook twitter-button iglogocolor

Month-long #CHDAware Challenge 

Join the fun: become a fundraiser and earn great prizes!

This is our only social media fundraiser for 2018 and we need your help!

Our Goal: $20,000 to support our essential programs offering care packages, hospital trainings, patient and family resources and so much more.

Thanks to all your hard work!  YOU are making a difference. We’re just halfway through the month with over 90 registered fundraisers! It’s not too late to join and win some amazing prizes!

Click here to for more information about the challenges, prizes or simply how to set up your fundraising page.

Keep up the great work! Together, we are #ConqueringCHD!


Where in the World is Echo? 

We spy with our #CHDWise eyes…..ECHO!

Echo has been traveling the globe giving knowledge and hope to new CHD families and providers. He’s been spotted in some pretty amazing places! This month, we are going to be featuring some of the fantastic places Echo has been to as he blazes a #CHDWise trail everywhere he goes!

Submit your picture of Echo on your adventures to Echo@conqueringchd.org and we may feature it on our social media pages with the hashtag #ISpyEcho


Success!!

 

We brought back two fan favorites for the first half of heart month and because of you we we sold a total of 126 that raised $1,090 that will directly support the lives of CHD patients and families through our great programs like transparency and public reporting, the guided questions tool, conquering CHD care packages, and the legislative conference.

Shirts will be delivered 2-3 weeks AFTER the campaign closes (feb.14th).

 

 


Gear Up to support heart families!

Check out our online store for #ConqueringCHD apparel, bags, buttons, and morel!

Don’t forget to pick up your very own Echo the Owl! The heart on Echo’s chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD.

Order your very own Echo the Owl, today, and we will also add one to a care package to be given to someone hospitalized due to CHD. Echo can be Purchased in our online store HERE!

 


Turn Awareness into Action!

Each one of us has a story to tell. These stories make a great impact when told the right way to the right people. Share your story with your representatives.  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!!

 

 

 

 

Then, on February 27th, from the comfort of your own home, you can support the effort of 190 advocates who will be visiting their lawmakers on Capitol Hill in Washington D.C. to discuss CHD research funding and this legislation  Stay tuned for ways that you can get involved “off the hill.”


#CHDAware Fundraising Challenge 2018

Join our #CHDAware 2018 Fundraising Challenge to support  our critical programs that help improve the lives of those living with CHD. 

We need YOU to help so we can reach our goal of $20,000.

All you need to do is register as a fundraiser on our Challenge Page. While the fundraiser will be open all month, much of the activity will be concentrated to CHD Awareness Week.

Complete any one of our amazing challenges and win some pretty great things:

HAPPENING NOW: Launch Day Fun: The first 10 fundraisers who raise $100 after our launch at 8am EST on February 1st will receive a PCHA umbrella.

CHD Week Goodness: Every fundraiser who gets at least 10 unique donations of $10 from 8am EST on Feb 7th through 8pm EST on Feb. 14 will get a PCHA Pint Glass!

The Whole Shebang: The person who has raised the most money at 8pm CST on February 28 will receive one of each of this month’s prizes.

We have a few secret challenges you’ll learn about when they happen, or they wouldn’t be a secret! But one may or may not include a never seen before car sticker!!!

HAPPENING NOW: Lastly, anyone who registers to become a fundraiser and raises $100 or more during the month of February will win an exclusive PCHA t-shirt, designed just for our amazing #CHDAware Challenge fundraisers!

 

Be sure to register as a fundraiser and we will provide you with sample emails, FB posts, tweets, stories, memes, video ideas, and more, to be sure you are successful and bring in all the fun prizes!  But most importantly, every dollar you raise will benefit people with CHD and their families, whether it is through care packages, policy changes, or important resources.  Anyone who donates will be helping to Conquer CHD!

Registering to become a fundraiser takes less than 5 minutes and is as easy as 1, 2, 3!

1. Fill out the online sign up form 

  • Enter your first and last name.
  • Enter your mobile phone number.
  • Enter your email.
  • Confirm you’re not a robot by checking the box
  • Click “Become a Fundraiser”.

You’re officially a fundraiser! You’ll receive an email that will welcome you to the campaign, supply you with the link to your personal fundraising page, and your custom text number (ex. Text CHDAware2018 to 71777) so your supporters can donate to your campaign simply by texting! You’ll also see an “edit my page” button that will allow you to edit and manage your campaign. This link and the email will be titled “Details about your new fundraising registration!”

2. Personalize your page

The last step is to personalize your page.

  • Upload a picture (a selfie will work!)
  • Set fundraising goal
  • Personal message telling people the impact they can have if they give right now.

3. Share, share, share

Share your fundraising page through email, social media and even text to get your friends and family involved.

 

YOU DID IT!

To view the campaign’s progress and check out other fundraisers & donors CLICK HERE