Posts Tagged ‘CHD Awareness’

From the outside in

November 9, 2010

There are several thousand worthwhile causes and just as many ways to advocate for them. But if you want to be effective, occasionally you have to turn things inside out. Look at what you are doing from the perspective of an outsider.

First, how would you describe what you do? Personally, I write about living with my heart defect, and occasionally I am asked to speak to others who are facing the same problem. You may notice that the letters CHD did not come out of my mouth. Because 85% of the general population does not know what those letters mean. So why confuse them? And the majority of people “switch off” when they hear jargon. Many a Heart Parent can tell you, when the doctor first described what was wrong with their child’s heart and he/she used “Doctor Talk”… they were more confused than informed. So to be a good advocate, you keep the jargon to a minimum.

Using jargon implies an extra level of knowledge – one that those new to your organization may not have.  We all know what a Left Subclavian to Left Pulmonary Artery anastomosis is (Hint: That is the medical description of a Blalock-Taussig Shunt) but others might not. And they might not know who Blalock or Taussig are, or what a shunt is. Some may see all this jargon as a secret handshake – you’ve got to be “in the club” to understand it. That’s a turnoff right there. But the Heart Defect world is full of medical language and jargon, so it could be very valuable for your organization to provide a list of acronyms to every new member or worker. Welcome to the club; here’s the secret handshake.

What’s your group doing? Defining the mission quickly and clearly are important points. And it needs to be a specific goal – “Fighting CHD!” is too vague to be a goal. You need a mission statement, something that can sum up your activities in one sentence. Everyone needs to know it, and everything done on behalf of the organization needs to be done to meet that goal. A good mission statement keeps you on target. Whenever your group does something that accomplishes your task, write about it and take photos. Video is even better – and a good compact video camera is pretty reasonable these days. Don’t let Earl write the story just because he’s been here since the organization started; hire a writer if you need to. And don’t take “Grip and Grin” photos – get photos of your people doing something to advance the cause. Photos are proof that you are actually doing what you are saying that you are doing.

What do you want from donors? If the answer is money, we’ve got a problem. Even the best organization can sully its good name if it seems that they always have their hand out. People will give to a cause they support, but not every single week. A better thing to do is to figure out how to involve the donors. If there is a donor who seems to have no connection to the Heart Defect Community that you can determine, why not ask him/her to be a part of the next hospital visit?  Odds are that you will not lose the next donation – and you could turn him or her into a full-time supporter, helping out as much as possible. Get the people out on the edges involved… they may be your next group of leaders!

The Early Special at the Funky Heart Cafe

February 4, 2010

Let me remind you about two events that you want to be a part of if you live in the Palmetto State: Heart Parents Justin and Shannon are going to be hosting a Congenital Heart Defect (CHD) Awareness Breakfast this Saturday (February 6, 2010) at the Fatz Cafe on Broad River Road in Irmo, South Carolina. If you aren’t from around here, just head for the center of the state: Irmo is a suburb of our capital city, Columbia. The breakfast starts at 7:30 AM and continues until 10:30 AM, and for $7.00 you can get Pancakes (Butter and Syrup will be available, but remember, the arteries that get clogged will be yours!) Sausage, Fruit, and a beverage. And your $7.00 will go to the Medical University of South Carolina (MUSC) for CHD research! Their son Derrick is recovering from heart surgery (Less than 3 weeks ago!) but he says that he will make an appearance if his busy schedule allows. Hey, he’s lost some important “Kid Time” during his hospital stays, he’s still trying to catch up! Derrick is also a coin-carrying member of the Funky Heart team; ask him nicely and he might show it to you.

Once you have eaten so much that you need a hand getting to your car, drive over to The Inn at USC for the Palmetto Hearts CHD Conference! The Inn at USC is located at 1619 Pendelton Street, which is downtown. You could use a good walk after that big breakfast you just ate, but Fatz Cafe and The Inn are too far apart. Park up the street and walk the rest of the way.

The CHD Conference starts at 1:00 PM and lasts until 5:00. Featured will be several doctors from MUSC and Kim Russell, an adult CHD Survivor and author of the book In a Heartbeat. I’ve met Kim; she’s a classy woman and a strong advocate for CHD Survivors.

It’s going to be two great events – and I can’t be at either one of them, due to previous obligations. So it’s up to you to go in my place!

Something to Talk About!

January 7, 2010

Sung to the tune of “Something to Talk About” by Grammy winner Bonnie Raitt

People are talking, talking ’bout people
I hear them whisper, you won’t believe it
They think we’re fragile, oughta be under cover
I just ignore it, but they keep saying
We laugh just a little too loud
We play just a little too hard

We look just a little too tired
We’re stronger than they think we are, Darlin’

Let’s give them something to talk about
Let’s give them something to talk about
Let’s give them something to talk about

How about us?

I feel so foolish, I never noticed
People act so nervous, could they be scared of us?
It took a rumor to make me wonder
Now I’m convinced they don’t know about CHD

Now we’re talkin’ about it every day
Raisin’ awareness every night
Hopin’ we’ll defeat it one day
CHD doesn’t own us, so let’s really show ’em, Darlin’

Let’s give them something to talk about
A little mystery to figure out
Let’s give them something to talk about
How about us?

Let’s give them something to talk about
Let’s give them something to talk about
Let’s give them something to talk about
How about us, us, us, us?