4 things to do during National Birth Defects Prevention Month

Congenital heart defects are the most common birth defect.  Period.

Part of Conquering CHD means working to make sure that they don’t happen in the first place.

Let’s support the CDC and the National Birth Defect Prevention Network’s efforts to prevent birth defects.

Birth Defects Infographic

Here’s what you can do!

1) National Birth Defects Prevention Month Tweet-Up– #1in33

Promote National Birth Defects Prevention Month all month long on Twitter!  Follow NCBDDD director, Dr. Coleen Boyle (@DrBoyleCDC), who will share a fact each day during January to raise awareness about birth defects. Each daily fact will be marked by the hashtag: #1in33 (a reference to the prevalence of birth defects). Re-tweet the facts and add your own, using the hashtag #1in33.

Each year, total hospital costs for U.S. children and adults with birth defects exceed $2.6 billion. To learn more visit www.cdc.gov/birthdefects

2) Social Media Buttons

Post one of these buttons on your Web site, blog, or social networking site (e.g., Facebook page) to increase awareness of birth defects.

3) Family Stories & Photos (Flickr)

View stories and photos of families affected by birth defects in CDC’s Flickr album. There several CHD stories!!

4) National Birth Defects Prevention Network Educational & Promotional Materials

The National Birth Defects Prevention Network (NBDPN) has educational and promotional materials available via their website. In 2013, the NBDPN Parents Advisory Group created a special public service announcement to raise awareness about birth defects, which was launched from www.endbirthdefects.org.  The PSA is available for downloading.  Feel free to use these materials to promote birth defects awareness and prevention.

Fixed? Not so much

We. Must. Keep. Fighting.

9 years ago, today, at 12:30pm I heard it.  Standing in the hallway with his lunch tray in hands (I had missed post-surgical rounds, but that’s another story,) the world renowned Dr. Tweddle told me that Nicholas was fixed.  Yep, “fixed.”  


A week later our amazing pediatric cardiologist told me his heart was fixed and he would grow up without any problems. His words may have been slightly different, but the message was the same.

My first wake up call arrived when Nicholas was 4. I was sent a research study that hinted at the trouble some kids with coarcs have as adults.  Hmm… easy enough to ignore.  Especially since he met all his milestones, and was keeping up with his peers.


Then came the speed bump a year ago.  Nicholas’s blood pressure was abnormal, undetectable even, in his left arm.  Oh, and the funky looking thing on his echo, last summer.

Just last week, I had to listen as doctors planning a research study discussed recent information from Europe that stated most kids with coarcs will have problems as they get older. Ugh.

Fixed? Not so much.  I have faced the hard truth that there will be problems.  I will do everything I can to make sure that Nicholas stays in specialized care.

Yet, the cold hard truth is that there just isn’t enough information.

Tribute to TinMan

So unexpectedly and deeply affected by the loss of Nolan.  I had not met him, or his parents, merely an onlooker to his journey.  Yet, my heart is breaking for his family.  For all those who have lost a child to CHD.

We must keep fighting.

[vimeo http://vimeo.com/83506422]

From the website:

On January 5, 2014, 2-year-old Holden Flynn (The Tin Man) had a heart attack while waiting for his brand new heart, and he lost his battle with congenital heart disease.

Just before Christmas we had filmed Holden and his parents in the hospital for “Arnold Palmer Saves Christmas” while they waited for his new heart, and we had a little bit of left over footage.

We made a little memorial for our friends the Flynn’s, Trey and Nicole. In our time with them over the years, I’ve seen moments of the epitome of what it is to be a father and a mother — they loved their son. So much. And they never gave up hope for him.

They laid down their lives for Holden.

That’s what a parent is. Thank you Trey and Nicole for letting me catch a glimpse of that beauty.

JanYOUary – Celebrating YOU!!

It seems like every month has become symbolic for an issue, or two or three.

Right now, the CHD community is gearing up for February Awareness month. (We’re a little bit excited over here!!)

(Thanks Heart Hugs for the image!)

However, I saw a promo touting this month as JanYOUary and it made me stop and think.  When it comes to advocating for research, your child’s care, or even your own health, it all comes down to YOU.  Your story is what makes the difference.

So take time this month to focus on you.  Dr. Oz even has a step-by-step plan for the month.  

More specific to CHD, Mended Little Hearts offers tips for caregivers and managing stress that focus on taking care of you.

We appreciate you (although Volunteer Appreciation Month is in April,)  and, this month, we Celebrate YOU!



The ONE thing for 2014

It’s a New Year.  For a lot of people that means “new” things. New things to do, new things not to do.  We often resolve to make these “things” happen, or not happen.

But, really, it’s usually about making a change.  The best way to make a lasting change is to focus on ONE THING.  Yep, one change at a time.  

Two of my favorite leadership authors, Chip and Dan Heath, wrote an entire book about lasting change and how to make it happen.  A great read for the New Year.



As you challenge yourself to change ONE thing this year, consider the impact you could have by simply resolving to tell your story!  In February, the Pediatric Congenital Heart Association will have it’s website and several of its programs up and running.  Included will be many opportunities to tell your story. So you’ve got a month:




2013 Social Media Top 5 – (A little late…)

While I was writing my New Year’s post, I realized I had failed to properly acknowledge last year.

Last year’s resolution was to start, and maintain a blog.  Well…  Like most resolutions I started strong.


And then, failed miserably. But, we need to celebrate our success right?  So, I scoured all social media activity this year, and there were a few bright spots:

5. The Funnel Perspective


Yes, there are times when life around us resembles a tornado.  Read more.

4. Advocacy Day 2013


 There were many great posts about 2013 Advocacy Day but this one was everyone’s favorite.  Advocacy really is fun!!

3. The Power of the People


You are the ones that make all the difference!  Read more.

2. Research and Recommendations

New research and new guidelines – lots of progress in 2013.  A few of the favorites include exercise guidelines, a neurodevelopmental outcomes study, and a statement about prevention and treatment for thrombosis.

1. Awareness American Girl Style

AG Awareness

Can we end the year any better than this?

So we’ll close out our reflection on 2013 with the most popular quote of the year:

I am one Graphic

Happy New Year everyone!!!

Wrapping Paper

I have never been good at surprises.  Keeping anything a secret is nearly impossible for me.  My kids have figured it out, too.  If I leave a gift wrapped present out, they quickly begin guessing and if they are even remotely close, I have to run and hide for fear of giving it away.  Just a thin sheet of paper between the unknown and a great surprise, and I am very capable of spoiling it.wrapped present

Being “in transition” with my advocacy work is a lot like holding a wrapped present – and a bit more difficult than I had expected.   For someone who likes to share (perhaps, too much?) I struggle, daily, with how much to reveal about what this transition process.


But, I can contain my excitement no longer…  I am so excited about a new project I am working on, with an amazing group of people.  Ah, there, I said it.

Here are a few more sketchy clues that I feel comfortable sharing at this point:

  • I am no longer working with the Adult Congenital Heart Association.
  • Yes, I will still be doing CHD advocacy – Are you kidding, I eat sleep and breathe it!
  • There will be a huge educational component, too.
  • The focus will be in the pediatric space, but there will definitely be life-long messaging.  It really is a continuous loop: to ensure that our kiddos grow up to be vibrant adults with CHD (ACHD) we need to understand the adult space in order to improve what we are doing in childhood.
  • We will all need to stand together to make this work!!!

As soon as the basic framework of the project is set in stone, trust me, I will shout it from the mountain tops.

In the meantime, find your inner child and start getting at least a little excited for what’s under the wrapping paper!



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!”