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

 

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

Lincoln Clay Shockey

 

Our son Lincoln was born on April 26, 2015 after a very eventful pregnancy.  At 24 weeks, we found Lincoln’s CHD, Hypoplastic Left Heart Syndrome, after I developed a placental abruption and a multitude of other complications which put me onto hospital bedrest for the duration of the pregnancy.  He was delivered in Louisville, as scheduled, but was so sick he was air lifted to Children’s Hospital of Philadelphia at less than 24 hours old.  On his 5th day of life, the first day we were able to hold him, he was taken back for the first of three palliative open heart surgeries in order to survive.  He would go on to have his second surgery at 4 months old, and his third at 2 years old.  He has had countless MRI’s, echo’s, sedations, heart cath’s, hospital stays, and the slightest illness could mean life or death.  Although he is healthy as he can be for his condition, one complication could mean our last resort option…a heart transplant.  Lincoln has taught us that no battle is too tough to fight, and he is the reason I advocate passionately for CHD’s.  Medical advances have come so far in just a few short years, but there is so much more that needs to be done for these precious warriors who are born having to fight for their lives, for the rest of their lives.  Lincoln lives in Kentucky (although we’ll always call Philly our second home), with his parents, and 4 older brothers.

Jeremiah Shanks

Jeremiah was born with a congenital heart defect. We found out at our 18 wk ultrasound that there was something wrong with his little heart. After multiple ultrasounds, many echos, transfer to the UK team, & then another transfer to Cincinnati, we gave birth to our otherwise healthy baby boy on August 4th. He was born with transposition of the great arteries, an ASD & a significantly large VSD, pulmonary stenosis, & a cleft mitral valve. We spent his first 2 wks of life in the cardiac ICU where he underwent two heart cath procedures to allow for adequate mixing of the blood in hopes to carry him over until he was big enough for open heart surgery. Within a month, we were back for an overnight stay at Cincinnati Children’s for a blood transfusion & then again the next month for yet another cath procedure to enlarge the stent that was placed prior near birth. The goal was to beef up this baby to 5kg & when he exceeded that & was doing so well, they raised the goal to 6-7kg. His date was set in Dec to have open heart surgery January 22nd. Upon admission to this hospital stay, Jeremiah was 7.5 kg, having exceeded yet another weight goal!

 

His open heart surgery went better than expected! Both cardiologists (in Lexington & Cincinnati) & the cardiothoracic surgeon thought he would have to have a single ventricle repair. We found out during the procedure that the doctor had successfully repaired his heart to two ventricles. Unfortunately, his AV node and SA node would not pick up communication after surgery and after 10 long days of waiting, he went back into the OR for a permanent pacemaker. Jeremiah has a pacemaker implanted into his belly to make sure that his heart functions normally. According to the doctors, this is not a setback nor do I have much negative things to say about it. It’s what his little heart needed. He’ll have just a few limitations but should live an active & healthy life!

Alee Faith

Alee Faith was born on June 16th, 2016 .After some poor feeding issues and a sweating episode we ended up at UK on June 27th and we were given her diagnosis: Truncus Arteriosis with vsd. We were transferred to Cincinnati Children’s Hospital and Alee had open heart surgery on July 5th, at 19 days old. The surgeons placed her conduit and corrected the VSD during that particular procedure.
Alee then had a heart cath where 5 stents were placed in December of 2016. She will continue to have surgeries/procedures throughout her life. Life changed drastically for our family when our precious Alee came along. We have follow up visits with our cardiologist at UK every couple of months and we never really know what we are going to be told. The conduit that they placed doesn’t grow with Alee as she grows and gets bigger and in her particular case she has had moderate leaking with that conduit/valve pretty much ever since it was placed. We don’t know if/when her cardiologist is going to come in and inform us it is time to have ohs again, another heart cath, or that we just need to schedule another follow up visit in 3-6 months and everything is still looking the same for now.
We have to hope and pray for the best but at the same expect the worst with her Diagnosis. Organizations like PCHA provided our family with so much hope & support. Although it very well seemed that our world stopped spinning the night of June 27th, 2016,  we didn’t feel so alone with this having the support that we had. PCHA is by our side as an advocate for our heart warrior and a voice alongside our own that she so desperately needs. This Heart Journey continues for our daughter and all other heart warriors. They can never be fixed, only mended time and time again.