HLHS Dad goes to Washington D.C.; Part 1

Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life.

As Day 1 began to arrive it became obvious that the weather was determined to throw a monkey wrench into my plans.  On the day before I was scheduled to fly out, we actually got a little bit of snowfall here in Charlotte.  Now it didn’t even snow a half-inch and none of it stuck to the roads, but here in the Carolinas that amount of snow is equal to the apocalypse!  Schools closed, people didn’t go to work, the grocery stores were packed.  Me?  I went to work.  After all, I’m a New Englander…so for me this was just an average Tuesday.  Still, I’d be lying if I wasn’t concerned about my upcoming travel since they cancel things at the drop of a hat here.  Luckily, though, the flight was still on and the roads were nice and clear. I had everything packed, including my leave-behinds and some CHD Awareness colored socks (I love crazy socks):

 

I had a good 50-minute flight into DC, picked up my bag and used Uber for the first time to get to the hotel.  I had a credit due to being a UNCC alum, so I put it to good use.  What a great experience…WAY better than a taxi!  After a few issues with my room key (the first 2 didn’t work) I managed to get a little down time before registering for the conference and grabbing some lunch.  At registration we were given these cool pins that I immediately put on and it actually started up a lot of conversation in the elevators, which was great:

 

I jumped right into sitting with a table full of strangers and it was great to meet people from all across the country: I met a heart parent from right there in DC, a heart family from Florida, a family who unfortunately lost their little one (kudos for them for being there to advocate…so brave!), and I also met this guy:

This young man is Jacob and he’s from San Diego.  He was born with HLHS and received a heart transplant at a young age.  He was a very cool guy and had an amazing story and outlook on life.  I got to spend some time hanging out with him and his Aunt on this trip and I’m glad I had the opportunity.  I am going to blog more in depth about him and the work he’s doing, so keep an eye out for that!

So anyhoo, we kicked off our training, which included discussions on how to tell our story, decorum on the Hill, how to use social media, and lots of presentations from guests.  These included a CHD survivor and a heart parent (her son was the Darth Vader kid from that car commercial a few years ago).  We also saw a very interesting presentation from the NIH regarding CHD research.  It was really fascinating and I am going to be blogging more in depth about it soon (I know there’s a lot of “see me later” stuff going on), but here’s a little preview:

TO SEE THE PREVIEW AND READ THE ENTIRE BLOG, visit the original post here.

Volunteer Opportunities

Be a part of something bigger.

The mission of the Pediatric Congenital Heart Association is to Conquer Congenital Heart Disease.  We know that we cannot do it alone.

PCHA is growing rapidly in size, reach and programming!  We are forming several new volunteer parent/patient committees and need your help to make them a success.

Getting involved is easy:

  1. Complete the online volunteer application form.
  2. Someone from PCHA will contact you to discuss the best fit for you.
  3. Participate!

Here are just a few areas where we are seeking volunteers:

  • Administration
  • Advocacy
  • Blogging
  • Events
  • Fundraising
  • Newsletter production
  • Patient Education
  • Public Policy
  • Social Media
  • Volunteer Coordination

Join our team today –

Together, we will Conquer CHD!

Volunteer

New Legislative Champions Added

Congenital Heart Disease advocates from the Pediatric Congenital Heart Association visited, emailed and called their legislators, yesterday asking the members of Congress to support CHD research and surveillance.

Advocacy worked!

We have already added new legislative champions to the list with new Caucus members and Dear Colleague Signers.  Check out the Legislative Champions list to see if your’s has responded to the call: http://conqueringchd.org/#advocacy.

Let’s make the list bigger and better.

Write or call your Representative and ask simply ask him or her to sign the Congenital Heart Dear Colleague Letter (contact: Dao.Nguyen@mail.house.gov) or Join the Caucus (contact: thomas.power@mail.house.gov). For more information he or she can contact advocacy@conqeuringchd.org.

Thank you for all you are doing – we are making a difference!

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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Help Monitor and Manage CHD

The Pediatric Congenital Heart Association is pleased to support the efforts of the American College of Cardiology to bring you this opportunity:
Whether you are a parent caring for a child with congenital heart disease, or an adult managing your own care, NoMoreClipboard personal health records (PHRs) are a secure, online solution for tracking and monitoring your medical information. This practice, in collaboration with the American College of Cardiology, is offering CHD patients and their families free NoMoreClipboard accounts. You can use your online PHR to organize and update information from your appointments, and securely share information with the other healthcare providers you see.
Use your PHR to:
  • track CHD diagnoses and procedures
  • maintain health histories for all your family members — including conditions, medications, allergies, procedures and immunizations
  • coordinate care among all members of your healthcare team: family physicians, pediatricians,  cardiologists, neurologists and other specialists
Your NoMoreClipboard PHR is created by you and contains only the information you enter. Data is securely stored and password protected, plus you have 24/7 access to medical information whenever you need it, from any web-enabled device.
For more information or to sign- up contact lvie@nomoreclipboard.com

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!

Medical Advisory Board

Through Collaboration – we will Conquer CHD.

We are thrilled that we have succeeded in bringing together some of the greatest medical professionals in the field to serve on our medical advisory board.  These dedicated folks meet monthly, providing insight, direction and expertise to support the programming of PCHA.  We are so grateful!!

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Brad Marino, MD, MPP, MSCE – Lurie Children’s Hospital

Co-Chair

 

 

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Amy Basken, MS – Pediatric Congenital Heart Association

Staff Co-Chair

 

 

 

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Jonathan Byrnes, MD – Cincinnati Children’s Hospital

 

 

 

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Michelle Gurvitz, MD – Boston Children’s Hospital

 

 

 

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Dunbar Ivy, MD – Children’s Hospital Colorado

 

 

 

Jeff Jacobs

 

Jeffrey P. Jacobs, MD – All Children’s Hospital

 

 

 

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Kathy Jenkins, MD, MPH – Boston Children’s Hospital

 

 

 

Dr. Lantin

 

Regina Lantin, MD – Texas Children’s Hospital

 

 

 

Mahle

 

William T. Mahle, MD – Children’s Healthcare of Atlanta

 

 

 

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Matt Oster, MD, MPH – Children’s Health Care of Atlanta

 

 

 

Sara Pasquali, MD – C.S. Mott Children’s Hospital

Julie Slicker

 

Julie Slicker, MS, RD, CSP, CD, CNSD – Children’s Hospital of Wisconsin

 

 

 

James Tweddell, MD – Children’s Hospital of Wisconsin