Wish Granted

We try and teach our kids the importance of giving back. It’s the right thing to do. When we hear of a benefit for someone or some charity we try and go to support them.  I never thought my family would ever have a direct benefit, until now.

I was talking with a friend a few months ago about Tommy and he said, “Does he qualify for the Make a Wish Foundation?”  The thought never crossed my mind.  Ten minutes later he had given me an application.  After some small paperwork the doctor said we did qualify and Make a Wish was at my house talking to Tommy about his wish.

Tommy’s is superhero crazy.  He wanders around the house saying, “Spiderman, Ironman, Hulk smash.”  It was clear he should meet the Marvel superheroes.  And I’m incredibly excited to announce we are headed to Orlando for a meet and greet at Universal Studios and Disney World today!

I’ll post pictures on Facebook while we are there for anyone who wants to follow along with our trip.

Getting back to why it is important to give back.  I have since learned my dad used to DJ pro bono for the local chapter of Make A Wish when it was starting up.  His work and the generosity of many others 30 years ago have given my family a chance to take this once in a life time trip together.  And we are incredibly grateful.

Heart Month is Over, Can We Stop Talking About CHD?

Heart Awareness Month is over, we can stop talking about CHD right? No, of course not there is so much more work to do to raise awareness.  Most people who know about CHD have been thrust into the world of heart defects with a child’s diagnosis or their own diagnosis.  It’s incredibly traumatic for many reasons but primarily because it is something we never heard of. Why is that?

Congenital Heart Defects aren’t known to most people because there are so many different types and combinations.  On top of the variety, when we talk to people about CHD sometimes the umbrella term of CHD never comes up.  I’m guilty of it too. When I talk to people about my son I try to break it down to why his heart is different and sometimes I never say “CHD”. I’m trying to make is so someone who has no medical background can understand.  If I say things like single ventricle or Pulmonary Atresia they have no idea what I’m talking about.  I tend to keep it simple, I bet most people do the same thing.

If CHD is ever to become a household term we all have to make more of an effort in the branding of the condition. For those outside of the marketing world, branding is when you give something an identity.  When you hear of other diseases, for example cancer no matter what kind of cancer, you have a base understanding of what that means.  There is a cluster of cancer cells growing and causing major problems in the patient. You may not know the severity but you know the person who has it will be fighting to get well and sadly not all will win that fight.

When most people hear CHD or Congenital Heart Defect they don’t have a base knowledge to work from.  They don’t know how common it is and they don’t know how many kids we lose because of it.  When I speak with people I try to assume they have no idea what I’m talking about.  It allows me to give them the basics and most critical information.  If they show an interest I’ll go into more detail.

I enjoy talking about my son and CHD.  He is my third child and he has changed the way I parent all of them.  He has made me realize how I need to enjoy every moment. He has shown me how strong they can be at a very young age. He has inspired me to help raise awareness of CHD.  Together we can let everyone know what CHD is and how they can help.

Don’t miss opportunities.  Get involved with the CHD charities.  Write a letter to the editor of your local paper.  Wear CHD merchandise. Make a donation big or small to a foundation. Utilize your contacts for sponsorships and donations. And when you talk to anyone about the diagnosis of the CHD person in your life don’t forget to tell them it is a congenital heart defect. It’s all about the branding.

We Talk the Talk, Can We Walk the Walk?

5 bucks 2In the CHD community we talk all the time about how we need more research, we need more answers, we need more awareness and we need more funding.  Well funding starts with us. People respond to action. It is up to you and me to show the rest of the world CHD is important and worthy of their support by supporting it ourselves.

There is an estimated 2,000,000 people living with CHD.  Let’s say on average those people with CHD have 3 close friends or family members who really support them.  That’s an additional 6,000,000 people bringing us to 8,000,000 total who would like to see CHD get more funding.  Let’s look inward at our community. If every one of those people went online to their favorite CHD charity and donated $5 we are looking at $40,000,000.  Can you imagine the impact that would have?

I have been saying that I’m going to do it for months now. It’s time I start taking action.  I donated $10 to three CHD charities that’s $5 each from my wife and me.  We live paycheck to paycheck like most families.  However, $30 isn’t going to break us.  I want CHD funding so we can get on the national stage and make a major positive impact for our CHD loved ones.

I’m officially giving you the challenge to donate whatever you can.  The smallest amounts can have a very large impact.  If you can’t donate, ask others to contribute. The reality is most people won’t take action, even though they want to. This is a grassroots challenge.  If we make it viral you will be amazed at the results.  Share this challenge on Facebook, Tweet it out, Text your family and friends.  Put a jar in the lunchroom at your work. Let people know CHD funding is important, especially to you and they will respond.

Will you read this post and nod your head yes, or will you click over to a CHD charity and give what you can? Are you to shy to ask for others to help our cause or are you willing to take a leap of faith and ask others to help the cause.  It all starts with us. #FundCHD


Here are a few CHD charities you can donate to. If you don’t see your charity email me and I’ll add it to the list.

Children’s Heart Foundation


Adult Congenital Heart Association


Saving Tiny Hearts Society


Mended Little Hearts


Why I’m Not Wearing Red for Heart Month

Macy's got on board with ACA. This is one example of many of corporations using heart month to help acquired heart disease.

Macy’s got on board with ACA. This is one example of many of corporations using heart month to help acquired heart disease.

We all know February is Heart Month.  I’ve seen so many people in the CHD community touting their red attire in support of their CHD warriors.  It’s awesome to see people taking action to try and raise awareness for the cause. The question is, are people outside our community getting the message?

February is heart month, our CHD efforts are in competition with acquired heart disease who have a huge head start on us. They have the machine in place to generate more articles, TV segments and to solicit the all important donor dollars. Acquired heart disease also has hugely successful campaigns like “Go Red For Women”.  So when we wear red are we achieving our goal of standing out? Or are we blending in causing our message to get lost?

I would never discourage someone from taking action.  If you want to wear red, go for it. Any awareness you can raise is fantastic. I would suggest you stand out by wearing RED and BLUE, the official colors of CHD.  And really emphasize the blue so people understand your efforts are different.

We can no longer afford to blend in. It’s time to stand out and really separate ourselves from acquired heart disease.  We should ask ourselves as a community. Is February really the best month for us to push our cause into the public conciseness?  It’s a discussion we really need to have. My answer is no.

Not only is the month dominated by acquired heart disease in every way, it is also African American Heritage Month. That means TV stations who might be willing to run Public Service Announcements for us have to share the limited time they have available with other important causes if they can squeeze us in at all. The same goes for pitching articles and trying to get on-air segments for national and local television programs.  All that time is limited and we are fighting an uphill battle to get CHD the coverage it deserves. Additionally, corporations are committing their money and support to other causes.  We are competing with Valentine’s Day too. There are a ton of stories being generated focused on V-day taking away  potential space for us.  National Heart Day is February 14th.  No one knows it outside our community because they are preoccupied with their significant other or lack there of.

By continuing to use February as our awareness month we get far less impact then we would in a month we really claimed as our own.  It’s already over saturated. We need to be different.  We need to be bold.  We need to stand on top of the hill and claim a month as ours so when we say why CHD is important people listen and take action to support it.  Is it January which already is national birth defect month? Is it November? Is it another month?  It’s time to start thinking outside the box and get CHD to the next level of awareness and funding. Let’s start the dialogue to get us there.