The power of the people (that’s you!)

The most common way people give up their power is by thinking they don’t have any. – Alice Walker

Ok – here it is… I am an advocate who loathes politics.

Why?  I believe in the system.  I really do.  But, I believe it has been corrupt by power and money and infrastructure.  It is no longer about representing the people, but representing the interests of those in power.  A compelling argument, from the people, no longer drives decisions.

I realize these are gross generalizations and that there are good guys out there.  Here’s the story of one.

I wanted to share this with you because I want to offer HOPE … hope that despite my pessimism you CAN and are making a difference.

I am still riding the high of having over 100 people in Washington D.C. telling their story about CHD (yes, I will write about it, eventually!)  Just listen to a few of the follow-up comments from those we met with:

“I know so much more about congenital heart disease because you came last year!  Thank you.”

“I have a sibling/friend/child with a heart defect. You guys are making such a difference.”

“Keep doing what you are doing.  Keep meeting with the legislators.  You are making a difference.”

You are making a difference.  Keep telling your story.   Fist Bump for encouragement… 🙂

Two hands: man and woman, isolated on white

The Funnel Perspective

funnel cloudThese past few weeks have seemed as though a tornado has swept through my life.  We all have those moments.  Sickness, deadlines, unexpected interruptions.  During these times, the only things that get done, are those few things that demand the most attention – kids who need to be fed and clothed, husband who needs to be loved, work deadlines – enough said.  Knitting and blogging had to wait.

But, when you think about it, this is a little bit how advocacy works.  The government is dealing with a bit of financial tornado right now – things like sequestration, the budget re-authorization and the debt ceiling.  All buzzwords that we may not understand, but realize that they certainly aren’t “feel-good” things.   So, during these times, its the things that demand the most attention that will get recognized.  That’s you and I.

I recently had the privilege to attend an advocate training summit for the National Patient Advocacy Foundation (NPAF). We learned about the NPAF priorities, and how to advocate for these issues at the state level.  Of particular interest was state implementation of aspects of the Affordable Care Act, also known as Health Care ReformIf this is an issue that is important to you, I would suggest visiting their website for more information.

The format of this meeting allowed for excellent advocate interaction and discussion.  One of the topics that I was charged with leading was about the identification of advocacy priorities.  As we were talking, I doodled a picture on a piece of scratch paper which ended up becoming a big hit.  Bare with me, as this idea is a work in progress, but I wanted to share it with you.

It’s a funnel in it’s own right, just a bit more practical than a tornado.

Priorities Funnel

At the top we start with the Patient Issues.  If you think about CHD, there are hundreds, if not thousands, of things we could list off that we could improve in the lives of those living with CHD and those to be born with a heart defect.  An advocacy organization gathers the issues of concern from many sources including what patients and medical professionals tell them are problems.

Then, the issues are filtered down to develop Organizational Priorities.  First and foremost, groups assess whether the issue raised fits with-in the organizational mission.  They look at legislative feasibility, or whether this issue can effectively be addressed through the legislative process. They also assess the impact of the issue in comparison with other pressing concerns.  They look at who potential partners could be and opportunities for coalition building, whether we need to champion the issue or if someone else can take the lead.  And finally, resources are considered – how much time, effort and money will it take to reach out goal.

A given organization may end up with anywhere from a handful to several dozen priorities.  Many of these priorities can be addressed by working directly with legislators, federal agencies or strategic partners.

However, there are definitely cases where advocate involvement is essential to the success of the efforts.  These issues are considered advocate priorities.  They are selected based on timing and the current state of governmental affairs, as well as availability of advocates and the nature of their personal story.

The advocate priorities may seem limited in number, but this is a good thing.  It is a lot of work for an advocate to learn about an issue.  It is important for the advocate to have knowledge of the legislator’s position on the issue, as well.  The volunteer time and energy of advocates are valuable and should be maximized on a few pointed issues.

So there you have it.  Probably a bit more detail than many of you need, but alas, these are the kinds of things I think about… a lot.  🙂

Awareness Week – Don’t forget the ask!

There are many fabulous CHD Awareness effortProfile pics out there.  I love to see all the red on my Facebook Page.  There are also many efforts happening outside of social media – in the schools, in the malls, in the hospitals.  AMAZING!!

We can also use this opportunity to move people to action.  Raising awareness is great, but we want people to do something about it!!!!  So as you promote the week, don’t forget to ask your audience to do something…

Here are a few ideas-

  • Discover how many people they know with CHD– it really personalizes the “almost 1 in 100” and “over 2 million” statistics.
  • Donate – To research, to support, to advocacy, even just a few dollars can make a huge difference.  There are many worthy organizations out there.
  • Tell their story – it can be very difficult for someone with CHD to share their experience.  By telling one new person their story, they can make a world of difference
  • Write their members of Congress – Of course, I had to include this!!!  They can write a simple note reminding them it is Congenital Heart Defect Awareness Week.

Raising awareness is critical – moving people to action gets results!!!

YOUR TURN –  Share with us your awareness activities and how you included an “ask!”

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 [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

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!!