The power of numbers.

I firmly believe that your story is what moves people to action.  But, it is important that your message be grounded with accurate information.

Let’s review: The key to successful advocacy is developing a relationship with your lawmakers.  Most of my relationships are based on feelings. We laugh, we cry, we get angry.  Only with a few people, my husband, my accountant, do we talk numbers.

Don’t get me wrong.  Numbers can be used to create feelings, such as I found $20 in my pocket!  But, those numbers have to have meaning behind them, and truth, too.

Meaningful NumbersFunctions

Big numbers create big thoughts.  When you say that nearly 2 million people have congenital heart defects – that is a big deal.  Small numbers make it personal.  Nearly 1 in 100 are born with a heart defect – that increases the odds that it touches everyone.  Money talks – the cost of pulse oximetry testing is less than $4 per baby.  You don’t need to know a lot of statistics, a few can make an impact.  But, don’t forget, nothing is as powerful as sharing your own experience.


Accurate Numbers

There are a lot of different CHD statistics floating around out there.  I checked the websites of 4 different reputable organizations and they all had different statistics, varying slightly in numbers and wording.  The CHD community is in a bit of a tough spot.  There really isn’t great US data for congenital heart disease, beyond birth.  So, how do you come up with statistics when there are no hard numbers?  Great question.  That is why we need to advocate for CDC funding to address the huge gaps in demographic data for CHD.  In the meantime, I think we need to rely on the experts’ best estimates.

When a group of experts from major health organizations and federal agencies got together to form the Congenital Heart Public Health Consortium (CHPHC), one of the first orders of business was to come up with statistics they could agree upon.  It took nearly nine months.

Here are some important highlights of these “Gold Standard” statistics:

  • CHDs are the most common birth defects. CHDs occur in almost 1% of births. (That is, nearly 1 in 100.)
  • An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
  • Nearly 40,000 infants in the U.S. are born each year with CHDs.
  • CHDs are nearly as common as autism and about twenty-five times more common than cystic fibrosis.
  • Approximately two to three million individuals are thought to be living in the United States with CHDs. Because
    there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
  • Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that
    the number of adults living with CHDs is at least equal to, if not greater than, the number of children
    living with CHDs.

For the complete report check these out:

Numbers are important, but so is your.

YOUR TURN: Do you believe these statistics are accurate?  Are you going to use 1in100, anyway? Do you use statistics when you tell your story?

Getting to know your Lawmakers…

They make the decisions, but they work for you.  I used to be so intimidated by elected officials.  But, that is exactly what they are – elected.  By us!

However, they don’t know what is important to you unless you tell them.  Think about it for a second.  Do you put the interests of your friends before those of a total stranger? Most of the time, I do.  Why?  Not because I care less about the stranger, but because my friends’ needs are more frequently in front of me.

Personal relationships are the fertile soil from which all advancement, all success, all achievement in real life grows. – Ben Stein

The key to successful advocacy is building relationships.  I stand firmly behind this, and you will here me say it a lot.  In fact, move over Margaret Meade, this Ben Stein quote has become a new favorite!!

So, let’s take a look at how to start building a relationship with your elected law maker.  I must say, I kind of get a little nerdy about this and keep notes on my legislators.  It started out as a sticky note – another obsession of mine, and has since evolved into a spreadsheet because I have a few more to keep track of for work! 🙂  So get out your pen and sticky notes-

Close Up Of Businessman Attaching Name Tag

1) Know their name. Sounds simple, but when I first started I only knew who a few of my legislators were. True confession, I rarely even voted!  But, that’s another post…

Let’s start with your federal lawmakers.  You can find out who your 2 Senators are by visiting  You can figure out who your Representative is at These are great websites because it tells you a little about your legislators, where their offices are and how to email, call or write them.

At the state level, it is a little bit more complicated, since it varies by state.  By visiting the State Legislature page at, you can find your state’s website.  Then you will need to search for your local representative(s).

2) Know what is important to them.
My family is very important to me.  I make a lot of life’s decisions with their best interest in mind. The same goes for politicians – look at their political priorities, social issues and any other background information that might paint a picture of how they make decisions. This will help when thinking about what to say to them.  I have worked with a Senator with very extreme political views, I make sure that I talk about what is important to me in a way that won’t offend him.  When I research a legislator, I start with the legislator’s website.  I have also used a good ‘ole Google search and discovered many revealing news articles.  Lastly, check out the Caucus page on the Adult Congenital Heart Wesbite (ACHA) to see if you Representative has joined the Congressional Congenital Heart Caucus.

3) Determine how CHD fits into their world.
As an advocate, CHD has likely impacted you very deeply.  It is very helpful to find ways to make this same connection with your lawmakers.  Since nearly 1 in 100 are born with a CHD, it is likely that somewhere, your legislator has been impacted.  A few things I look for include: whether he or she has a family member with CHD or other chronic disease.  If not, I consider whether they work in the health field or simply, if they are a parent. I was very lucky to discover that one of my Senators has a daughter with CHD. It worked to open a door that would have otherwise been closed.  News articles and campaign websites can be helpful in uncovering these deeper connections.  Campaign information often shares more personal anecdotes.  But, don’t get discouraged, sometimes it takes time, and a personal visit, to learn how to best make the CHD connection.

Don’t forget, they may have power, but they are people, too!  By learning how to relate to your legislators you can develop a lasting and beneficial relationship!

Your Turn: How well do you know your legislators?  Let us know if you uncover anything interesting!

This blog is the first in an introduction to advocacy series.  Click here, for the summary post.


Let’s get started! What we’re up to this week…

Oh my gosh!  I am so excited.  My first post, well second if you count the place holder.  So far, I have kept my New Year’s resolution – for one whole day!

Silhouette of a girl jumping over sunset

I hope you have also resolved to participate in this exciting adventure called advocacy!  I promise you will learn something, but what I really hope to accomplish is to move you to DO something.

It wouldn’t be right if I didn’t start out with my favorite Margaret Meade quote (don’t worry, I have others up my sleeve for later…)

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.

>Ahem<  – She’s talking about you and I!!   We share a passion.  We need to unite our voice and I promise, we can make a difference!

I started as a Mom with a very sick kid.  I did not like the fact that I had never heard of a heart defect, and was scared to death about what the future held for my child.  (Sound familiar?)  I told my story to a few people, then a few more.  Turns out there are quite a few people with CHD out there (over 2 million!!)  After my first trip to Washington D.C. as a volunteer advocate, I was hooked.  Telling my story and watching the impact was rewarding beyond words!

Since I began advocating, I have seen a CHD law passed, funded and implemented at the federal level, and many other CHD laws passed at the state level.  I did not do that.  No single person did that.  It was a collective effort of many advocates, people just like you.


Ack, that is my reminder I have been talking too much.  So enough jabbering – let’s get started.  Many of you are not new to CHD, but new to advocacy.  So this week, we’ll just start with the basics.  If you are a veteran advocate, hang in there.  There is lots of great stuff in store!!  The first several months of the legislative year always promise to be exciting!

As I said, this week, we’ll begin with the top things that helped me most when I was getting started.

1) Get to know your lawmakers.  I can’t tell you how many times I would (ok, still do) get their names mixed up.  But, the more times I reached out, the more I learned!  For more information read the related post.

2) Know the facts.  Not a lot, just a few, accurate ones.  Facts help put things in perspective.  Check this out.

3) Get your story straight.  Your story is your tool for success.  Learn how to sharpen your story here.

4) Know what we’re fighting for.  There are many, many problems children and adults with heart defects face on a daily basis – however, we only advocate for a few at a time. Here are a few sources for great info.

5) Go for it!  The key to successful advocacy is developing relationships with your lawmakers. Check out our Action Alert section for different ways to take action!!

I have had amazing mentors, and I hope to provide you with the same love and support! Advocating can be what you want it to be. The important first step is that you commit do doing something!

Your Turn: Have you ever advocated before? Tell us about your experience.

Together… we can make a difference!

Advocacy is fun.  Advocacy is easy.  Advocacy is important!!!!

I am so excited to be starting a blog!!!  Anyone who knows me will tell you that I love advocacy, and I love to talk.  What better way to put this together than a blog! (I also love exclamation marks – sorry, grammar folks.) As Public Policy Manager at the Adult Congenital Heart Association, I get to see the benefits of successful advocacy on a daily basis. It is my dream to get more people involved in advocacy and I am hopeful that a blog is one way to do that.

Although the official start date will be January 7th, I have been working obsessively to lay the groundwork.  But, a blog is only as strong as it’s readers.  I need your help to make this blog yours, too.

Who should read this blog?

  • Everyone, of course!
  • Anyone interested in being an advocate of any kind.  The stories, tools and suggestions you will find here can fit any sort of advocacy, really.
  • But mostly, anyone impacted by congenital heart defects.  There are millions of us out there.  Imagine the difference we could make!!!

Why should you read this blog?

  • Anyone can be an advocate and make a world of difference.  I am living proof!!
  • There is a lot to be done.  Through this blog, we can laugh together, learn together, and work together to make a difference!
  • I eat sleep and breath CHD advocacy.  I have learned a few things along the way that I would like to share with you!

A few things you can expect:

  • Advocacy Tools
  • Action Alerts
  • Shout Outs
  • Anecdotes
  • Guest Bloggers (Can’t go it alone!)

A couple of topics in the works:

  • Advocacy 101: Tips to get you started
  • CHD Priorities: What are we fighting for?

Thanks to efforts of advocates, like you, we have made a lot of progress in both State and Federal advocacy.  Join us to learn how you can make a difference!!