ACTION ALERT: A Community United for CHD

Action Alert

Encourage your members of Congress to support congenital heart disease research – call or email them, today.

On February 26, 2015, congenital heart disease (CHD) advocates from across the country, representing more than 10 organizations are reaching out to their lawmakers to ask for three things:

  • Provide $10.0 million in FY2016 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.
  • Support the National Institutes of Health’s efforts to develop innovative and cost effective treatment options for those living with congenital heart disease.
  • Continue robust funding of the Department of Defense Peer Reviewed Medical Program to help lessen the disparate research funding of the most common and costly birth defects.

Members can support these activities today by:

  • Signing the Congenital Heart Dear Colleague Letter.
  • Joining the Congressional Congenital Heart Caucus.
  • Submitting a Congenital Heart Appropriations Request.

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Add your message – make our voice stronger!

Our mission is simple: to Conquer Congenital Heart Disease.  In order to do this, we need research and data collection for children with congenital heart disease.

Send an email today to encourage your members to support federal funding for research and surveillance.

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 senate.org or house.org
  • 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 phone or email address you were given.

2) Copy and paste the paragraph below – adding your own personal story. or use the following script: My name is ____, from (City,State) and I am calling on behalf of the Pediatric Congenital Heart Association to ask that Senator/Representative _______ support congenital heart disease public health research and surveillance at the Centers for Disease Control and Prevention.

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: Support Congenital Heart Disease Research

Dear Senator/Congressman (or staff) [Fill in name here]

I’m writing to urge you to support federal research and surveillance for the most common birth defect.

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.

[Insert your story here]

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:

  • Provide $10.0 million in FY2016 to the Center for Disease Control’s National Center on Birth Defects and Disabilities to support surveillance and public health research in order to build upon current activities to better understand the public health impact of congenital heart disease across the lifespan
  • Support the National Heart, Lung and Blood Institute’s efforts to develop innovative and cost effective treatment options for those living with congenital heart disease
  • Continue robust funding of the Department of Defense Peer Reviewed Medical Research Program to help lessen the disparate research funding of the most common and costly birth defects, congenital heart defects.

You can demonstrate your support by:

  • Signing the Congenital Heart Dear Colleague Letter,
  • Joining the Congressional Congenital Heart Caucus
  • Submitting a congenital heart appropriations request.

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

Thank you-

[Your Name – your city/state]

 

ACTION ALERT: Email Congress a Reception Invitation

Action Alert

Encourage your member of Congress to learn more about congenital heart disease.

Invite them to attend the Congenital Heart Reception in conjunction with our Congenital Heart Legislative Conference.

Send an email today to encourage your members to attend.

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.org or www.house.org. If you have identified the health legislative staff, 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: Congenital Heart Legislative Conference

Dear Senator/Congressman [Fill in name here]

Please join more than 130 patient advocates from across the country to celebrate our legislative champions for congenital heart disease.  This is a great opportunity to meet patients, families and providers while learning more about the most common birth defect.

[Insert your story here]

 

Join us:

Congenital Heart Reception

Wednesday, February 25, 2015; 6:00 pm

The Thornton Room

Hyatt Regency

400 New Jersey Avenue, NW Washington, D.C., 20001

Find the complete invitation here.

RSVP here.

 

Join us as, together, we work to Conquer CHD!

Thank you-

[Your Name – your city/state]

Webinar: 2015 Advocacy Update

Wondering what “advocacy” is all about? Can’t go to Washington D.C. but want to participate anyway? Interested in knowing what the Pediatric Congenital Heart Association priorities are this year?

Our 2015 Advocacy update will answer precisely those questions!

2015 Advocacy Update

Tuesday, February 17th 7:30pm ET/6:30pm CT

Click here to register

Join us to learn more about the advocacy efforts of the Pediatric Congenital Heart Association, our top priorities for 2015 and how you can get involved and make a difference!
The power of your story can help us Conquer CHD!

After registering, you will receive a confirmation email containing information about joining the webinar.

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Give From Your Heart

Valentine's Give

It’s February and most of us are thinking about hearts. Unfortunately, not enough folks are thinking about congenital heart defects.

PCHA has been hard at work to change that. In just a few short weeks we will be co-hosting the Congenital Heart Legislative Conference in Washington D.C., where more than 100 advocates will visit their lawmakers and hundreds more e-advocates will reach out via email to get our legislators thinking about CHD.

We will also be launching a social media campaign during Congenital Heart Week to get our friends on Facebook and Twitter thinking about CHD.

Another one of our programs for 2015 is provider education, or as we like to call it, Building Bridges.  In a groundbreaking medical professional meeting last month, PCHA represented the CHD patient/parent population, encouraging congenital heart center leaders to think about transparency, empathy and CHD.

Now, we need YOU to think about CHD. This February, we need to raise $20,000 to support our education efforts like the Legislative Conference and Provider Education programs.  Every dollar you give will help empower patients.

When you see  all the hearts this month, instead of buying a dozen roses ($30) a box of chocolates ($10) or an extravagant dinner ($100) donate your Valentine‘s gift to support families of children with heart defects who need the extra love.

Collaboration for Change

ACC CV Summit

The American College of Cardiology recently hosted a Summit for providers in leadership positions to share information to improve their practice. PCHA was privileged to join Sisters By Heart in the opportunity to help educate these same amazing providers about building stronger relationships with their patients and parents through transparency and empathy.  We experienced an incredibly positive response to the patient education tool we are developing called “Suggested Questions.”  This tool, being designed collaboratively with patients and doctors, not only will empower patients by providing them with questions to ask their medical team that they may never have thought of, but in turn is educating the doctors about what parents need to know about the journey they are on.  This tool is still in draft stage and will be available for public comment in the next few weeks!

Advocacy Success – Increased CHD Funding!

Your efforts are working!  

Congress is working hard to wrap things up before the end of the year.

We are thrilled to report that the anticipated budget includes an increase of $1.1 million from $2.9 million to $4 million in 2015 to fund public health research and data collection through the Centers for Disease Control and Prevention, as outlined in the Congenital Heart Futures Act.

Additionally, congenital heart disease was included, again, in the Department of Defense’s Peer Reviewed Medical Research Program, which is funded at $247.50 million, an increase of $47.5 million! This is a competitive grant opportunity for which CHD researchers can apply. We also had members of the CHD community reviewing the grants.

We must continue our efforts!

Each year, advocates, like you, connect with their lawmakers through emails, phone calls and visits.  Your voices are being heard – despite serious budget cuts, we continue to see increases in CHD funding opportunities.

We are making progress, but there is still a huge need for funding of public health research and data collection to better understand congenital heart disease across the lifespan.

Your are the answer!  Your story matters.  Take Action:

Sign a petition.

Write your legislator.

Donate to support our advocacy efforts.

Join us in Washington D.C.!

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Advocacy Success – Newborn Screening

PCHA has been supporting the efforts of the March of Dimes to ensure passage of the Newborn Screening Saves Lives Act.  We have reached out to you in the past to contact your legislators about this key support for screening including CCHD screening.  We wanted to you with an exciting update!!

From our Friends at the March of Dimes:

Breaking News: Senate Passes Newborn Screening Bill!

We are one step closer to the finish line! The U.S. Senate passed H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act (NBSSLRA), by unanimous consent on December 8. The bill now returns to the House for ratification of an amendment included by the Senate.  If the House approves this final change, the bill will go to the President for signature into law. Thanks to all of you for your commitment and always answering the call to action! It is because of this dedication and all of your efforts that legislators listened and worked to get this important legislation passed.
As a reminder, NBSSLRA extends federal programs that provide assistance to states to improve and expand their newborn screening programs; supports parent and provider education; and ensures laboratory quality and surveillance for newborn screening programs. For more information, check out our press release.
Your hundreds of phone calls, letters, meetings and messages letting legislators know how important this issue is to you made a real difference! Congressional offices let us know they were hearing from constituents and stakeholder groups alike about the urgent need to pass this bill. We want to also thank our champions Senators Kay Hagan and Orrin Hatch and Representatives Lucille Roybal-Allard and Mike Simpson for their steadfast efforts to help improve the health of babies nationwide.
Stay tuned as more news and movement on this bill develops throughout the week!

 

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

In The Thick Of It

I’m having one of those days.

All I needed to do was reheat a bowl of soup for lunch.  We have been without a microwave for about a month, now, so heating anything is not quite as simple as it could be.  I dumped the leftovers into the small sauce pan, turned the burner on high and stepped away to check my email (of course.)  As I returned to the warmed soup, I became distracted by the phone, knocked the handle of the pan and proceeded to dump soup all over me, the counter, the floor, and of course the burning hot stove-top.  I was in the thick of it.  “It can’t get any worse,” I thought.  Until the dog came to investigate and delivered sloppy, soupy footprints throughout the rest of the kitchen.

There I sat, right where I was, lost in the mess around me.  I couldn’t go back. I certainly, couldn’t stay there.  I could only go forward.

As I was checking-in on social media, still vaguely smelling like soup, I was reminded of similar feelings surrounding Nicholas’s surgery.  Having our third child was supposed to be pretty straight forward.  Until I was distracted by his heart defect.  I had worry, fear, and anxiety dumped all over me.  And there I sat.  I sat there for quite a while.  I wanted to go back – it wasn’t supposed to happen this way.  But, I couldn’t.  So, I sat there some more, right in the thick of it. Until, I was strong enough to go forward.

Besides the frustration of a very, very messy lunch, my heart aches today for the countless people who are still in the thick of it.  My heart is breaking for those who are saying good-bye. I am worried along side those who are awaiting answers. And, I find hope in those who are starting to take steps forward, finding the strength to emerge – from the thick of it.

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Amy is the Director of Programs for the Pediatric Congenital Heart Association. She is the mother of three including Nicholas who is now 9.

You = Winning! The Importance of Advocacy

Throughout the month of October, PCHA is helping advocates meet with their legislators in district.  In this post, Tiffany takes a humorous look at why it is important to rise above the politics and meet with our legislators.  For more information about in-district meetings, visit our website or contact advocacy@conqueringchd.org.

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Although the polls may indicate the current recess on the Hill is a much needed respite for the general public, for advocates it is the perfect time to visit your legislators’ office.  Whether your elected official is involved in a re-election effort or not, call their district office to schedule an appointment to meet with them while they are in-district during the month of October.  If your elected official is being challenged in an election, call the campaign office of their opponent and schedule an appointment.

The visit(s) should be relatively painless as your mission is not to ask for money.  Your goal is simply to create or refresh their CHD awareness by telling your story and introducing, or re-introducing, the realities of congenital heart defects.  Your story, your voice and your visit help humanize the cause.  Many incumbents trying to retain their seat may be trying to change the public’s perception of their image by refreshing their vision and commitment to the needs of those they represent.  Many challengers of current House seats are looking for opportunities to better understand the needs of those they represent.  Either way it is a great time for a visit, your story and CHD awareness.

But before you go, a quick Q & A that you may find helpful!

Q: Ugh!  I can’t stand my representative.  I will never, ever, ever vote for them so why should I visit them?

A:  Trust me, I can relate…oh, how well I can relate!  BUT, I try to keep in mind that my representative was elected to represent me.  Telling my story and sharing the realities creates the opportunity for them to truly represent me, represent my child, and represent my family.  Whether or not they use the opportunity to represent me better as a constituent is up to them.  And whether or not they use the opportunity may never have an impact on my opinion of them or my vote.  But creating the opportunity will give me a chance to get a better ROI on my tax dollars that constitute their salary!

Q: Do you know what my representative said about (insert any issue here) or voted regarding (insert any issue here)?  How can I even speak to them without spitting on their shoe?

A:  Again, I can truly relate!  It may take an enormous amount of self-control to keep my voice loathing-free but I know I will move mountains for my son and those like him who are affected by CHD.  When I meet with my representative, I use my story to try to appeal to their emotional side as a fellow parent.  I use the realities to appeal to their intellectual side as a representative of my district and one who has some aspect to funding needs I want to discuss on a subsequent visit.    Bottom line, when I walk into their office I am my son’s mom.  My goal is to get their attention and gain their support for the needs of my son, the needs of CHD.  I understand that we may never agree on other issues in our country or world but if I can get them to support or agree on the needs of CHD, I can work with that.

Q: Why worry about my representative if they are likely to lose or why work with the challenger if they are unlikely to win?

A:  Because you just never know!  You don’t necessarily know who will win or who will lose.  You will win either way if you cover your bases with both the challenger and the incumbent.  You win because you began a potential relationship with the winning representative.  You win because the candidate who didn’t win may be able to be an ally in the fight or a great source for contacts who will be.  You win because both have heard your story and a little more awareness was created in the process.  You win because successful and unsuccessful candidates generally maintain some sort of a political voice that you may be able to use.  You win because there is a good chance it won’t be the last election run for either one.

So to you summarize: You = Winning!

For more information about in-district meetings, visit our website or contact advocacy@conqueringchd.org.

Tiffany headshot  Tiffany Mytty-Kline has been a tireless advocate for the congenital heart community.  She has worked to unite others in peer-to-peer support, raising awareness and both local and federal advocacy.  As the mother of two boys, the oldest of whom has a complex congenital heart defect, she knows the incredible impact CHD can have on a family.  When she is not advocating for her son or the CHD community, Tiffany is an adjunct teacher and the director of employee relations for a midwest truck dealership.