A Policy Agenda: A sticky note lover’s dream!

sticky notesI love sticky notes.  I mean I really love sticky notes.  (Well, actually, I love office supplies in general, but that is another story.)   I even have sticky note apps for my desktop and phone!!  The reason for my obsession:  I have many random thoughts throughout the day, and I often panic that I may lose one of these  gems, so I write them down.  I have sticky notes with lists, names, numbers, random thoughts, you name it.

If you were to look at the notes I have written over the years.  You will find a few that contain to-do lists for the day, some with to-do lists for the year, and one or two contain my “bucket list.”  In fact, I share the spirit of this quote:

“If you have a goal, write it down. If you do not write it down, you do not have a goal — you have a wish.” — Steve Maraboli

We can apply this same line of thinking to advocacy.  If we want to accomplish something with all of our advocacy efforts, we have to have wish, then write it down to make a goal.  Then we can work on the plans to accomplish this goal.

A policy agenda is a road map for advocacy work for 2013.  It keeps us focused, but also lets the world know what they are working on.

Your turn: If you could write your advocacy agenda, what would you include?  What do you want to fight for?

By popular demand… press release:

Thanks to Mended Little Hearts for the original template:  I modified it a bit for  CHD Awareness week. As I was typing this, it also dawned on me that you should contact your governor or city official’s office and see if they will submit the press release.  Much more likely to be picked up. 🙂

Include things like:


Amy Basken
Congenital Heart Disease Advocate (If you have an official title, I would use it)
363 Park Avenue
Prairie du Sac, WI 53578 (I love mail!)
(608) 370-3739

Governor Proclaims February 7-14 Congenital Heart Defects Awareness Week.

Madison, WI,  February 1, 2013.   Governor Scott Walker once again signed a public proclamation recognizing the number 1 birth defect in America, affecting 1 in 110 babies born each year.  Congenital heart defects (CHD) is the leading cause of birth defect related death in infants and CHD claims the lives of twice as many children as all forms of childhood cancer combined.  10% of those born with a CHD will not live to see their 18th birthday.  Even in adulthood, CHD remains a leading cause of death and is the number one heart problem for pregnant women.

Congenital Heart Defect Awareness Week is designed to bring attention to this serious issue.  Children diagnosed with a heart defect can have astonishing needs throughout their lifetime, ranging from multiple invasive procedures such as open-heart surgery to daily therapies for breathing and physical rehabilitation.  This takes a toll on school and work life, as well.  CHD is a costly diagnosis both emotionally and financially.

[Insert personal story here if appropriate – keep it short!]

For more information about Congenital Heart Awareness Week and how to get involved with CHD Advocacy, visit www.chdadvocacy.com [change to your organization and your website]

About Amy: [you or your organizations] Amy is a tireless advocate whose youngest of 3 was born with a serious heart defect over 8 years ago. Amy works to use her experience to ensure that those living with CHD have a long and healthy life. Amy has the privilege to work with lawmakers, federal agencies and major health organizations to create, fund and implement public policy related to CHD. She also works to educate and motivate advocates to share their story to make a difference.

Hang tight…

I am working on an action alert at ACHA.  It should go out on Thursday and I will post here.  If I come across anything in the meantime, I will be sure to let you know!!!

Under construction. Maintenance area.

Take Action!!!

Team with hands togetherSo, you’ve worked on your story, know what you want to ask for, got a few facts straight, done a little homework on your lawmakers – or at the very least, know their names.  Now, it’s time to get set, and GO!!!

My journey started small.  When I first started, I was simply asked to write an email.  Imagine my excitement when I got a response back!  I felt so empowered, I wanted to do more.  So, I sent two more emails.

Feeling so proud of my self, I got a little braver and made a phone call.  Just talked to the person at the front desk, but he took down my name and my message – wow!  That was easy!!!  More, I wanted to more.

Little did I know, I had been bitten by the advocacy bug.  I was hooked.  I was an ordinary mom-of-three.  Perhaps with a flair for communication, and a love of talking.  But, what I am trying to say, is I was not some experienced professional.  Just plane Jane off the street.  With a wing, and a prayer, or 2, or three, I took my passion (and boy was I passionate) and started chipping away at this thing called advocacy.

This thing called advocacy can be summed up pretty easily –  building relationships.

Vision without action is merely a dream.  Action without vision just passes the time.  Vision with action can change the world. – Joel A. Barker

There are some easy ways to get started – just takes a little time.

  1. Find your legislators on Social Media.  Friend them on Facebook and post a comment with your story.  Follow them on Twitter, and send them a tweet with your story.
  2. Give the office a call.  By simply leaving your name and a brief message, you will be counted.  Typically, a lawmaker gets briefed on his/her phone calls once or twice daily.
  3. Send an email.  The legislators websites have a form to submit emails.  It is quick and easy.

Once you’ve gotten the hang of things, there are still more ways to get involved.

  • Visit local offices.  Make an appointment to meet with the district staff at an office near you.  They will pass along your story and messages to the Washington D.C. office.
  • Attend Town Hall Meetings.  This is a great opportunity to ask a direct question to your lawmakers. Prepare your question in advance, and plan on being one of many.  Sometimes, it is helpful to go early or stay late and speak with legislative staff, too.
  • Use Traditional Media.  Writing a letter to the editor and/or an OpEd piece are additional ways to share your connection with your lawmaker in a public forum.
  • Visit the offices in Washington D.C..  Join with other CHD advocacy organizations and attend a Congenital Heart Advocacy Day.  For more information visit achaheart.org.

Check out the Take Action archive section for updated action requests.  Roll up your sleeves and lets go!!

So what is it we’re fighting for?

Part of being a good advocate is to be very clear about what you want, and have something specific to “ask” your legislator.

The problem is, there are many people asking for a lot of different things.  I, personally, feel that it is most effective to join with others who have a common message.  There is power in numbers.

Unity is strength…when there is teamwork and collaboration, wonderful things can be achieved. – Mattie Stepanek

Teaming up with a patient organization is a great way to start. Organizations with a commitment to advocacy usually have put a Bride with boxing gloves.lot of effort  into defining and prioritizing the problems they will tackle in a given year, researching these problems, coming up with adequate data, and assessing how they will fit in the political landscape.  These organizations tend to do a lot of behind the scenes work in addition to the work they do with their advocates.

Right now, I am aware of only two national patient organizations who advocate specifically for issues related to congenital heart disease.

I suggest you join one or both of these advocacy teams by emailing them, today.  They can let you know what their current advocacy priorities are.  The Adult Congenital Heart Association will even send monthly advocacy updates and alert you to any new opportunities to take action.  Mended Little Hearts can help connect you with your state advocacy team working on pulse oximtery screening legislation.

There are other advocacy organizations that are working to help with larger populations including those impacted by heart defects.

Again, I would suggest you learn more about their advocacy priorities and consider joining their advocacy teams.  These are just a few that I have experience with.  There are many others out there, as well.

Here are some issues that are important to me!

  • CDC funding for CHD data collection across the lifespan
  • NIH funding for multi-centered CHD research across the lifespan
  • Access to appropriate and quality care across the lifespan

Your Turn: What is important to you?  What are you willing to fight for?

This post is part of an introduction to advocacy series.  Click here, to find the other posts in the series.

Friday Brain Fart

Today’s post was supposed to be part of the series an introduction to advocacy.  It was supposed to talk about how to choose your messaging.

exhaustedWe’ll that one is going to have to wait!!!  I had the original post written two weeks ago.  A lot has happened this week.  Several very thoughtful conversations led me to second guess what I had originally written.

So I’m going to chalk today up to a work day, and a fart around day.  Basically, a Friday!

Hope everyone has a super weekend!!


The power of words.

Ever laugh so hard milk came out of your nose?  Chances are, someone told you a funny joke or a good story.  This funny story moved you to action – in this case snorting out milk.  While that is not the reaction we are looking for from our lawmakers, we want to apply this same principle.

ChatBubblesColorsIn a recent post, we talked about the power of numbers.  Meaningful statistics can have an impact.  But, nothing can move someone to action better than a great story.

We all have a story to tell.  Our story can and will make a difference.  Let’s work together to turn our story into a tool.

When my kiddo was born, it was 7 days of complete insanity.  When people asked to hear about what happened, it took me nearly 7 days days to explain it!  And to think, some of you have been in the midst of insanity for years!

Unfortunately, we don’t have days or years to tell our story to the decision makers.  Sometimes it’s just minutes.  So, just like a sword, it really is important that we sharpen up our story to be an effective tool.

Here are a few tips:

  • Keep it short – About 2 minutes. Time your story to make sure it is not too long.
  • Be clear – use plain words and avoid medical jargon.
  • Speak from the heart and talk about your experience.
  • Be accurate, honest and persuasive.
  • Avoid relying on statistics.
  • Be polite, respectful, patient and grateful.
  • Practice, practice, practice. Tell your story to others and notice their reactions. After each practice, edit what you liked, and what you didn’t like.

I now have many versions of my story.  One that is 2 minutes and one that is 5 minutes if people ask for more information.  I also have the 30 second version I can tell while running down the hall along side my legislator I just happened to catch getting off the elevator.

My story changes slightly based on the situation.  Whether writing an email, making a phone call, doing an interview or meeting my legislator face-to-face, my message should have 3 major components:

  1. Introduction: State your name, where you are from, your relationship to congenital heart disease, any relationship you may have with your member (if appropriate.)
  2. Key Message: Share the very brief version of your story.  Sometimes you will have a few seconds, sometimes a few minutes.  Describe the relevant issue and why it is important to you.
  3. Request or “Ask:” What you want them to do.  For example support NIH funding for CHD research or support CDC funding for CHD data collection.  True confession, I once did an interview, talked for 3 minutes and completely forgot to promote the advocacy event we were having.  Oops.

Go on, sharpen up your story.  It is the best tool you have.  Advocacy is about building relationships – no quicker way to make a lasting impression than with a meaningful story.

Your Turn – What is your story?  Feel free to post in the comments!

This post is part of an introduction to advocacy series.  Click here, to find the other posts in the series.

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 Senate.gov.  You can figure out who your Representative is at House.gov. 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 Thomas.gov, 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.