Ask Your Member of Congress to Sign the Dear Colleague Letter

 

ACTIONALERT

ACTION ALERT: Urge Your Members of Congress to Sign the Congenital Heart Dear Colleague Letter

 

Act Now!

Ask your Representatives and Senators to cosign a letter lead by Senators Durbin (D-IL) and Grassley (R-IA) and Representatives Bilirakis (R-FL) and Schiff (D-CA) to the Chairmen and Ranking Members of the Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittees urging continued federal investment in public health research and surveillance initiatives focused on addressing the lifelong needs of Americans with congenital heart disease.

This letter helps ensure that this critical funding continues and builds champions for congenital heart disease in Congress.

Here is an example of the letter that was distributed to the House.

Email your legislators, today!

Take action in three easy steps:

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

2. Copy and paste the paragraph 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.


 

Sample Letter:

Subject: Sign the Congenital Heart Appropriations Dear Colleague Letter, Today!

Dear Senator/Congressman [Fill in name here]

I’m writing to urge you to support continued federal investment in public health research and surveillance initiatives focused on addressing the lifelong needs of Americans with congenital heart disease by cosigning a letter lead by Senators Durbin (D-IL) and Grassley (R-IA) and Representatives Bilirakis (R-FL) and Schiff (D-CA) to the Chairmen and Ranking Members of the Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittees


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.

Demonstrate your support for this serious public health issue by signing the Congenital Heart Dear Colleague Letter.

  • In the House, please contact Kristin Seum (kristin.seum@mail.house.gov) with Representative Bilirakis or Dao Nguyen (dao.nguyen@mail.house.gov) with Representative Schiff to add your name to the Congenital Heart Appropriations Dear Colleague Letter. Deadline: Friday, March 18
  • In the Senate, join lead authors Senators Durbin and Grassley by contacting Max Kanner (max_kanner@durbin.senate.gov) in Senator Durbin’s office. Deadline: Friday, March 18

If you would like any additional information or sample report language to use, as well, please contact Amy at abasken@conqueringchd.org.

Thank you,

[Your name]

 

 


Your investment in our advocacy program provides great returns as we successfully advocate for millions of dollars in research funding.

Donate

2nd Summit on Transparency and Public Reporting

2nd Summit on Transparency and Public Reporting

 

The Pediatric Congenital Heart Association will host its second in a series of Summits to develop lasting policy solutions that will improve patient-family access to information and improve overall quality of care.

PCHA supports informed decision-making that will allow patients and families to obtain the best medical care possible.   Health information that is patient-centered, accurate, accessible, and effectively communicated is a necessary component of patient and family empowerment, resulting in shared decision-making and improved outcomes in both patient health and family experience.

As a first step toward achieving this, PCHA convened a Summit in August 2015, at the Ann and Lurie Children’s Hospital in Chicago. A multi-disciplinary group of national experts on congenital heart disease data and reporting worked collaboratively to achieve consensus on the important issues of public reporting.

Once again, the growing number of stakeholders representing surgeons, practitioners, professional societies, payers, federal agencies and policy makers, led by parents and patients, will meet at the 2nd Summit on Transparency and Public Reporting, February 16 and 17, 2016 at Johns Hopkins All Children’s Heart Institute, St. Petersburg, FL.  The conversation, building from the first meeting, will focus on mechanisms to achieve increased participation in reporting to national databases and increased public reporting.

Ongoing media coverage of hospitals and families impacted by a lack of transparency from thought leaders like CNN, Healthline and, most recently, the Philadelphia Inquirer, provide an inspirational backdrop for the meeting.

 

PCHA would also like to acknowledge Dr. Bradley S. Marino, chair of the Pediatric Congenital Heart Association Medical Advisory Board, Dr. Nicolas Madsen, vice-chair of the PCHA MAB, and Dr. Jeff Jacobs, PCHA MAB member, for their incredible efforts in the coordination of this event.

Together, we will improve access to information and improve outcomes.  Together, we will Conquer CHD!

#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

Email your Legislators about CHD!

LC 2016
As you read this, more than 150 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2016 Congenital Heart Legislative Conference.  They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD).

You can participate virtually by advocating from home!

Send an email, today to your lawmakers.  The more advocates who send emails, the stronger our voice will resonate in Washington D.C.
Take action in three easy steps:

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

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

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


Sample Letter:

Subject: Support Congenital Heart Disease Research

Dear Senator/Congressman [Fill in name here]

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

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

We urge Congress to:

  • Cosponsor the Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)
  • Provide $10 million to the CDC and $34.6 billion to the NIH in fiscal year 2017
  • Join the Congenital Heart Congressional Caucus (for House Members)

To cosponsor this important legislation (S.2248/H.R.3952) please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office, Kristin Seum (Kristin.seum@mail.house.gov) with Congressman Bilirakis’ office or Dao Nguyen (dao.nguyen@mail.house.gov) with Congressman Schiff’s office.  If you would like any additional information please contact Amy Basken at abasken@conqueringchd.org.

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

Don’t miss this chance to advocate from home!

On February 2nd,
we need you as we
unite our voices to
Conquer CHD!

On Tuesday, February 2nd, as part of the 2016 Congenital Heart Legislative Conference, more than 150 advocates from across the country will visit their lawmakers asking them to support research, data collection and awareness activities related to congenital heart disease (CHD).

LC 2016
You can participate virtually by advocating from home!

On Tuesday, join your fellow advocates in Washington D.C. by sending an email to your Members of Congress.

Don’t worry, we will post a reminder and provide you with a sample email for you to use.

In the meantime, here’s how you can prepare:

Find your legislators’ 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.org or www.house.org to find your legislators and their website.
    • 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.
Understand the issues:
This year, we will be asking Members of Congress to
  1. Cosponsor the Congenital Heart Futures Reauthorization Act. Officially known as S.2248/H.R.3952, the Congenital Heart Futures Reauthorization Act was introduced in November, 2015.  You can learn more about it here.
  2. Provide $10 million to the CDC and $24.6 billion to the NIH in fiscal year 2017 to support congenital heart disease research and data collection activities.  We are asking that CHD specific funding for the CDC’s National Center on Birth Defects and Developmental Disabilities be increased to $10 million. This increased funding will help build upon existing programming working toward improved understanding of prevalence, healthcare utilization and short and long-term physical and psychosocial outcomes. In the 2016 budget, the NIH received an unprecedented increase in funding.  We are asking that this funding continue to be supported at a level of $24.6 billion to ultimately benefit biomedical research seeking to better understand causes and improved treatments for congenital heart disease.
  3. Join the Congenital Heart Congressional Caucus (for House Members). Lead by Congressman Gus Bilirakis (R-FL) and Congressman Adam Schiff (D-CA), the Caucus is a great way for Representatives to demonstrate their support for the congenital heart disease community.

We look forward to uniting our advocacy network (that’s you!) with our advocates on Capitol Hill to send a resounding message to our lawmakers in Washington.

Together, we are Conquering CHD!

Talk to you, next week!

Give CHD a Voice – #GivingTuesday 2015

 

Join millions of generous donors on what has become a national day of giving.

“Give a gift that matters.” By donating to PCHA today, you will help Give CHD a Voice.

Your gift will:​

– Build our Advocacy Network
– Train CHD advocates
– Educate our lawmakers
– Secure millions of dollars in CHD research funding

Give CHD A Voice, donate, today!

 

Give CHD A Voice 2

Shoes Worthy of a Heart Hero

The Pediatric Congenital Heart Association celebrates creative efforts to raise awareness and educate the public about congenital heart disease.  This post was written by Jacob’s mom to recognize his incredible achievement!  

In September 2014, Jacob Burris was unexpectedly diagnosed with a CHD known as a coarctation of the aorta.  His disconnected aorta was repaired surgically last year at the Oregon Health & Science University, OHSU Doernbecher Children’s Hospital in Portland, Oregon. The medical care he received was amazing.  Since then Jacob has become a heart health advocate for checking blood pressure since detecting his high blood pressure is how his CHD was discovered at the age of 12.  At home in Eugene, Oregon, Jacob passes out 1” pins that remind people in our community to ‘Check Your BP.’

Nike_Doernbecher_Jacob_Burris_Portrait_rectangle_1600

Thanks to an incredible partnership between Doernbecher Children’s Hospital and Nike, Jacob is one of six patients out of hundreds of thousands that were given the opportunity to design a one-of-a-kind pair of shoes & apparel that will benefit the hospital that saves children’s lives on a daily basis. Jacob took this opportunity to advocate for heart health and also, to share his CHD story with the hope that it will inspire others who are affected by CHDs to find strength and persevere through the rough times. Jacob designed a classic- the Air Max 95 Premium. His shoe design has a lot of ‘double meanings’ that he hopes will strike a chord with the CHD community.

Nike_DBFS_2015_JACOB_pair_hero_white_rectangle_1600

The shoe features a custom made circuit board pattern with his name worked secretly into the circuitry. The toe of the shoe is blue and transitions to red by the time you get to the heel. For Jacob, this represents his blood flowing strong through his once obstructed circuits.  The colorway doubles as a nod to his favorite superhero and inspiration, Spider-Man. On the back upper you will find Jacob’s two thumb prints overlapped into the shape of a heart and the sock liner has a heart rate monitor that says ‘I walk to my own beat.’ Jacob plays the drums and he loves that the drum beats, and so does his heart. The tongue has a “JB” logo, representing his initials. But, if you look closely you will see that the ‘B’ isn’t quite connected all the way – just as his aorta was disconnected, it actually forms a 13 which is the age Jacob was when he got to create this shoe.

jacobs heart shoe

Jacob’s shoe also features the signature of Stan Lee – Spider-Man’s creator –  in the air pocket on the sole!  When Make-A-Wish granted Jacob’s dream to meet the legendary comic creator earlier this year, Jacob took the opportunity to ask ‘The Man’ if he would lend his signature to his custom shoe. Jacob is likely the biggest Spiderman fan you will ever meet and getting his ultimate hero, Stan ‘The Man’ Lee to sign off on the shoe was absolutely excelsior! Jacob also had the opportunity to work with his team of Nike designers to develop a very stylish hat and hoodie, which go great with his Air max 95 Premiums!

jacob's apperal & shoes

Jacob hopes people in the CHD/heart health community will want to help him spread the word by wearing some of his custom designs. You won’t have to wait long; the collection will be available November 21st in select Nike stores and online at Nikestore.com with 100% of the proceeds going directly to OHSU Doernbecher Children’s Hospital.To date, this partnership has raised over $11 million for OHSU. Our family is very thankful to be part of a community with CHD heart heroes and warriors that fight for a better future for kids and adults living with CHD.

For more information about Jacob’s incredible story visit his website at www.jacobsheartstory.com and ‘like’ our page – Jacobs Heart Story – on Facebook to show your support and stay updated on Jacob’s mission to spread the word about CHDs and heart health!

It’s In Your Hands

Being a heart parent isn’t easy. That’s no news flash. You’ve run the gamut of emotions from scared, to sad, to angry, then rinse and repeat. Oh yeah, and life doesn’t stop and wait for you to get it together either. There are days where you feel like maybe you’re starting to get it together, then comes a week where you’re feeling like the worst parent in the world. Through it all you try your best to hold on, and in this whirlwind of craziness that is our life we find ourselves craving encouragement. Well, Mom and Dad: I’m here to encourage you today.

I want you to take a deep breath, let it out, and then think for a moment about your hands. Think of all the things you use your hands to do. Next look back on this past week or two and remember a time where you used your hands to do some good. Maybe you used them to calm your heart warrior after a fall and a scrape. Maybe you placed a hand on another parent’s shoulder to let them know you’re there with them in their struggle. Maybe you’re making your famous spaghetti and meatballs that your kids love. How do you feel when you think of that moment? Let yourself be filled with that feeling.

Parents, there’s something special in our hands: something that brings joy and peace and safety to others. And that – in turn – makes us better. Let’s face it, we’ve seen a lot of profane things in this world: the tubes, the monitors, the incisions, the open chest and beating heart. We experience real fears and anxieties, real trials and struggles. In the midst of these things, though, is the work of our hands…and that work is sacred.

So when you’re pumping in that last tube feed and you’re tired, or you hammering out a supportive text message to another parent, or you’re shaking the hand of a lawmaker as you advocate for heart kids, or you’re snapping a fussy toddler with a beautiful scar into a car seat, I want you to realize that it’s sacred work you’re doing, in the midst of all the profane things we face. And when you get down and you feel like it’s all for nothing, I want you to close your eyes, take a deep breath, and think about what your hands have done this week. Create a special place in your mind where that feeling resides and make sure you always go back to it. Because you’ll realize that after close inspection, your hands are often busy doing very sacred work. Stay strong, parents.

HeartHand

 

 

 

 

 

 

 

 

 

 


BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

ACTION ALERT: Tell Congress to Support CHD

AA - Futures Act
Action Needed – 

Email your legislators: Co-Sponsor the Congenital Heart Futures Reauthorization Act

 

Email your lawmakers and ask them to co-sponsor the Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952.)

  1. Visit your lawmaker’s website where you will find a “contact us” form.  You can find their website at www.house.gov or www.senate.gov.  If you are a veteran advocate, you may have direct contact information from previous activities.
  2. Using the suggested talking points and your own personal information, edit the letter below and paste it into the online form.
  3. Let us know you took action: Tell us on Facebook, send us an email or complete the I did it! form on our website.

Suggested Talking Points:

  • The Congenital Heart Futures Reauthorization Act directs the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) to continue vital congenital heart research and data collection activities..
  • The law was introduced November 5th by Senator Dick Durbin (D-IL), Senator Bob Casey (D-PA), Representative Gus Bilirakis (R-FL), Representative Adam Schiff (D-CA)
  • This legislation builds on existing programs 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.

Email template:

Dear Senator/Congressman [Fill in name here],

I am writing to ask you to co-sponsor S.2248/H.R.3952, Congenital Heart Futures Reauthorization Act.This important legislation builds on existing programming which will improve understanding of the most common birth defect across the lifespan.

1 in 100 babies are born with congenital heart disease (CHD), the leading cause of birth defect related infant death.  There is no cure for CHD. Those children who do survive face life-long, costly specialized care.

[Using 4-6 sentences, tell your story here and why research is important to you.]

There are more than 2 million children and adults in the United States living with congenital heart disease. CHD remains a serious public health burden and must be made a priority.

To Sponsor S.2248/H.R.3952, please contact ed_hynes@durbin.senate.gov in Sen. Durbin’s office or kristin.seum@mail.house.gov in Rep. Bilirakis’ office.

If you would like any additional information, please contact Scott Leezer at advocacy@conqueringchd.org.  

Thank you,

[Your Name, Your city/state]

To learn more about the PCHA advocacy program, visit our website.