Action Alert – Dear Colleague Letter

Action Alert

 

 

 

 

Thank you to those of you who sent an email to your member of Congress – our advocacy efforts are working –  the Dear Colleague Letter in the House has reached 24 signatures!  

Now, we need to focus on the Senate!

Send an email to your Senator, today.

 

Building Champions for congenital heart disease in Congress is key to successfully supporting research funding.

One way that your member can be a Champion is to sign the Congenital Heart Dear Colleague Letter. But the deadline to do this is approaching fast!  See below for a current list of those who have signed the letter, or visit our Legislative Champions page on our website.

Ask your Senator to sign the Congenital Heart Dear Colleague Letter!

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

Take action in three easy steps:

  • 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 senate.gov or 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.
  • Copy and paste the paragraph below – adding your own personal story.
  • 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.

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

Dear Senator [Fill in name here],

I’m writing to urge you to support federal research and surveillance for the most common birth defect by signing the Congenital Heart Dear Colleague Letter, today.

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.

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

  • In the Senate, join lead authors Senators Dick Durbin and Chuck Grassley by emailing Senator Durbin’s office at Elise_Ackley@durbin.senate.gov  Deadline: Friday, March 20

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

Thank you-

[Your Name – your city/state]

 

HLHS Dad goes to Washington D.C.; Part 2

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.

Read the first part of his story here.

Day 2 of the Congenital Heart Legislative Conference was definitely an early start.  We were supposed to report for breakfast starting at 6:45am and that meant an early wake up time and packing up so I can get checked out of the hotel.  Luckily for me I usually get up at 5:45am for work, so it wasn’t a big deal…plus you can’t beat the commute of simply riding an elevator downstairs.  I got all my stuff together, including my bowtie swag (I gotta look fresh to death) and was ready to head to Capitol Hill:

CapitolHill1

After a good breakfast we were grouped up by state: there were a total of 5 of us from the great state of North Carolina.  We were given a list of the legislators we were scheduled to meet with.  My list had Congressman Richard Hudson, Senator Thom Tillis, and Senator Richard Burr.  The good news was that several members of our group were scheduled to meet with different people and most of us had the time to go together to these meetings, so I had a total of 5 meetings that day.  Of course, it would be an interesting day if we didn’t have some interesting weather: it was snowing in DC and Government was supposedly on a 2-hour delay (delayed government?  what?), but supposedly all of our meeting times were being kept.

So off we went into the tundra (it wasn’t that bad) and set out for our first meeting of the day:

CapitolHill2

Congresswoman Alma Adams

Congresswoman Adams represents the 12th District in NC, which includes Charlotte and parts of Greensboro.  We actually arrived to the office at the same time she did and she was very nice about greeting us.  As we waited I was really nervous about getting the day kicked off because I really didn’t know how these legislators would respond to our requests.  In a small way I thought it would go something like this:

jj-jameson CHD

Luckily, it did not.  Ms. Adams invited us all into her office.  She listened to our stories, asked some good questions, and was really patient with us.  She applauded us for coming out, in this weather, to share our story…and that it was so impactful because we’re parents and not paid lobbyists.  After spending time in training hearing that we might not get more than 5 minutes total, I think we must’ve spent at least 20 minutes with Congresswoman Adams.  At the end of our meeting I gave her the card with Nolan’s pictures on them and she smiled as she looked at it and said “Well hello there, Nolan. Aren’t you handsome?”  It came with such a genuine kindness and I think we couldn’t have kicked off our day with a better experience, especially for us first timers.  I know these legislators are busy and I expected to meet mostly with staffers (which is ok) but it was nice that Ms. Adams gave us a moment at the start of her day.

The fun doesn’t stop there, read the entire post here.

 

Finding Hope in Washington D.C.

Tori is  mom to 6 amazing children. 1 grown daughter and 5 boys. 4 are here on Earth and 1 is forever 13 months old and watching over us from heaven. You can read more about her journey on her blog: Finding Hope without Sterling. She has been a tremendous advocate for the Pediatric Congenital Heart Association.  Here, she tells us about her first trip to Washington D.C. to advocate.

SterlingI had the most amazing experience last week while in Washington, D.C. for the Congenital Heart Legislative Conference. I met so many wonderful people who share my passion for CHD advocacy. I was able to help out a little behind the scenes and even check in many of the participants. I learned so much and am still processing it all.

We were there to meet with our legislators and ask them to support NIH research to prevent, treat and cure CHD. For $10 million in CDC funding for data collection and public health research. And for $250 million in funding for the Department of Defense Peer Reviewed Medical Research Program. We would like them to take action by signing the Congenital Heart “Dear Colleague” letter. To join the Congressional Congenital Heart Caucus. And to submit a Congenital Heart Appropriations Request.

If you don’t understand the last paragraph, no worries. I had it explained to me and still had a hard time remembering it all. The important thing to know is that this is to support funding for research and for data collection. Research to help those we know have CHD’s treatment and hopefully one day a cure and to better detect those we don’t know have them, like Sterling. Our kids with CHD’s are becoming adults with CHD’s (which is a testament to the research already done!) and there just isn’t a whole lot of data out there for treating them.  There also aren’t very many doctors with experience in treating them. These things need to change. Supporting the above will help change that.

I was very honored to meet with our representatives and our senators and to share our stories. In my group we had 2 parents whose babies died from CHD’s, one knew of the CHD and I of course did not. Then we had 3 adult CHD patients and 1 friend of a patient. I was so nervous but they helped me out and I soon discovered that our stories are powerful. Watching the staff members come out with smiles and looks of “lets get this meeting done” turn to sadness and taking the time to ask questions and really try to understand what we were asking for and why it was so important.

Read the rest of the story, and more from Tori, here.

Advocacy Works – Dear Colleague Letter

Thanks to the amazing efforts of advocates – great things are happening in D.C.!

Senate Dear Colleague Letter:

In fact – in direct response to a visit by his constituents, Senator Grassley has agreed to be the Republican Co-Author of the Senate Dear Colleague Letter with Senator Dick Durbin!  We are expecting the letter to be circulated to all the Senate offices by the end of this week. Stay tuned for a call to action to alert your Senators.

House Dear Colleague Letter:

The list of signers to the House Dear Colleague Letter, keeps growing, too.

We’d like to send a shout out to:

  • Adam Schiff (D – CA28) Lead Author
  • Gus Bilirakis (R – FL12) Co-Author
  • Raul Grijavia (D – AZ3)
  • Eleanor Holmes Norton (D-DC)
  • James McGovern (D- MA2)
  • Yvett Clarke (D-NY9)
  • Carolyn Maloney (D-NY12)
  • Charles Rangel (D-NY13)
  • Sheila Jackson-Lee (D-TX18)

If your member is on this list, be sure to reach out and say thank you.  If not, check out our Legislative Champions List for the latest update.  You can also remind your member to sign be sending an email, tweet or Facbook post:

Sign 1

Take action next week:

We are planning an Action Alert – Dear Colleague Advocacy Day for next week so we can join together, once again, and ask our Members in both the House and Senate to sign the letter. Stay tuned for this important opportunity to follow-up with our legislators!

 

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