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Advocacy. Yep, it’s Personal.

Jul 19

Posted by: ACHA
7/19/2013 10:42 AM  RssIcon

By Michael Pernick

In my first government job several years ago, I worked as a junior legislative aide for a legislator in New York. My responsibilities mostly focused on constituent services: When a resident of the district needed help, it was my job to try to help them cut through bureaucracy and get them the best possible services out of their government. Occasionally, instead of coming in with complaints about potholes or issues with their property assessment, people came in to share personal stories that spoke to the need for broader policy change.

Elected officials and their staffs hear from special interest groups, lobbyists, and organizations with policy suggestions many times each day. But it is surprising how rare it is for actual people to come in and tell personal stories – and it is astounding how effective those rare stories can be at catalyzing action in a legislative office.

Earlier this year I attended the annual ACHA Advocacy Day, and rather than hearing stories from concerned citizens, I was the concerned citizen telling my story. I talked about the surgeries I had growing up. I explained that although I am thankfully healthy today, there are millions of Americans with similar conditions who aren’t as lucky I am. I discussed the fact that improvements in medical techniques for children born with congenital heart defects is a wonderful thing, but it also means that many more of us are surviving into adulthood and living full lives.

And I described the problems we’re facing as a community: We haven’t invested in research to better understand how people with these surgical corrections can best have a smooth transition into adulthood, and we haven’t invested in surveillance and tracking to gather data on adults living with congenital heart defects.

You know what the most amazing thing was? They listened. We may not see change overnight, but I know that our efforts played a small role in influencing a few of our elected leaders and their staff. As someone who has been on both sides of the table – as the legislative staffer and as the advocate with a personal story – I can tell you that these conversations really matter.

Everyone reading this blog has some connection to congenital heart disease. Either you are a patient who survived surgeries, or you are a parent, sibling, relative, or friend. Perhaps you are a medical professional who treats hundreds of congenital heart patients every year. Regardless, everyone reading this blog has a story to tell, and it is amazing how easy it is to tell it. The best part – you can make your voice heard in just three simple steps.

Step 1
Find your member in Congress (go here to find your member if you don’t know who it is).

Step 2
Call your member, explain that you are a voter in her/his district, and ask when a good time would be for you to come in discuss federal support for adults living with congenital heart disease. All members have district offices, one of which should be a short drive from you.

Step 3
Meet with your member or her/his staff and tell your story. Be sure to emphasize three asks:

  1. Continue support for NIH research on congenital heart disease.
  2. Increase support for CDC surveillance and tracking of adults with congenital heart disease.
  3. Join the Congenital Heart Caucus. (Click here to learn more about these three asks).

As an organization, we are lucky to have an extraordinary advocacy coordinator in Amy Basken. Please email her at with any specific questions, and of course let her know how it goes after you meet with your elected representative!

Michael Pernick was born with tetralogy of Fallot and grew up on Long Island, New York. He is currently a second-year student at NYU School of Law. He attended college at Wesleyan University and worked for several years on political campaigns and issue advocacy campaigns in New York, Connecticut, and Boston.

Location: Blogs Parent Separator ACHA Blog

1 comment(s) so far...


Re: Advocacy. Yep, it’s Personal.

Dear Michael Pernick,

I'm also from Long Island, NY. Miracle baby with Congentially Corrected Transposition of the Greater Heart Vessels. Rarer of the form of Corrected Transposition which requires immediate surgical intervention, as baby is born blue.

Since you work in Advocacy already, I might need some of your advice in getting through ObamaCare. Medicare, Social Security and other government programs you might be aware of for an (undiscovered) birthing defect.

I am very active at present. Hoping and praying to continue to remain active. Discussing future heart surgical options for newly discovered opening. I participated in a clinical trial, which might save or improve many lives in the future.

I'm presently studying to become a docent at a Presidential library and museum.

If you know how to pray (the rosary), please pray for me in all above endeavors.

Terrie Penticoff
Wife, Mother, Daughter, Sister, Volunteer

By Terrie on   8/15/2013 8:44 AM

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