I’ve been swallowed into this war since May 2009 and I’ve watched too many of those we fight for lost. Maybe it’s just me, maybe it’s just because I’m still angry my son was a casualty, but on what fronts are we winning? The Congenital Heart Futures act is the result of many dedicated individuals and advocates hard work and many restless nights. It is a great piece of legislation that addresses a significant problem with Congenital Heart Defects, the public doesn’t know, some in the medical community could care less and no one is funding the research but for the donations of very kind individuals to organizations like the Children’s Heart Foundation, however that said, there isn’t exactly a rush of submissions to the AHA for CHD Research projects either in children or adults. It is fact that the American Heart Association (AHA) directs only $0.30 from every donated dollar to research, and from that $0.01 goes to pediatric cardiology research for Congenital Heart Defects. (Source: Children’s Heart Foundation / Self Research @ AHA) and I can’t find anyone to give me a number of adult cardiology research for Congenital Heart Defects. Remember, these children do grow up, so care doesn’t stop after they have their first surgery. I don’t personally know Steve “The Funky Heart” but I know he had his OHS in 1967 — he’s been living with a Congenital Heart Defect repaired 42 years ago. I can’t even imagine what he faces on a day to day basis, how many times he’s heard, “I don’t know.”
Many fantastic people have started some great organizations to spearhead the problems faced by our community; The Children’s Heart Foundation, Mended Hearts, Mended Little Hearts, It’s My Heart, Saving Little Hearts on a national level, and even more people that have started some great things, like Kelly Manz and CHD Babies, Bobbie-Jo Steward and Join the Fight: CHD, more and more advocates are setting up individual efforts within the social networking sphere to really get the attention of others and to unite those of us that are affected. But what are we fighting for?
In 2005, Bob Wright the vice president of General Electric, and his wife felt moved because his grandson had been diagnosed with Autism, he founded “Autism Speaks”. They attracted a powerful board of directors including world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon. Easy enough when you have an unlimited amount of resources like that. Since it’s creation it has merged with 3 of the national autism organizations. And in 2006 it paid slightly under $1.2m (million) dollars to partner with the AD Council to launch a $25 million dollar Nationwide Awareness Campaign. Check this out, from the AD Council:
Autism is the fastest-growing developmental disability in the United States.* Fourteen years ago, only 1 in 10,000 children was diagnosed with autism. Today, that rate has soared to 1 in 150. Despite this prevalence, research shows that many parents of young children are generally unaware of autism. This campaign seeks to educate parents about the growing rate of autism in this country and to ultimately increase the level of early detection. Because there is currently no cure for autism and no effective means to prevent it, early detection is the crucial first step in helping children with autism. With appropriate early-intervention services, from ages 3-5, between 20% and 50% of children diagnosed with autism will be able to attend mainstream kindergarten. All of the PSAs communicate the startling statistic that 1 in 150 children are diagnosed with some form of autism. The PSAs also encourage parents of young children to visit http://www.AutismSpeaks.org to learn the signs of the disorder. The campaign launched in April 2006. * Centers for Disease Control
Now let me for a moment show you a vision that we probably all share. On January 21st, 2011 the following page was added under “Congenital Heart Defects” on the “Campaigns” section of the AD Council’s website.
Congenital Heart Defects (CHDs) are the most common occurring birth defect in the United States * Today in our country 1 in 100 children are born with a CHD, it has become an epidemic. Despite these large numbers, research shows that nearly all parents in our country are unaware of Congenital Heart Defects. This campaign seeks to educate the public and medical community about the growing rate in which Congenital Heart Defects occur in live births and the need for an increase in early detection as the death rate from non-detection is catastrophic as well as the growing need for medical options that provide a brighter long-term prognosis for these children that will follow them into adulthood. There is no cure for Congenital Heart Defects nor are there any means to prevent it, which is why early detection, education, family support and more research are needed to help both children and adults who suffer from CHDs. With detection at birth, these children face a much greater chance to survive and with research the growing number of children who have complex congenital heart defects and face a small chance of survival past birth, even with current medical treatment, can be given a better chance to survive in the future. All of the PSAs communicate the startling number that 1 in 100 children are born with a Congenital Heart Defect. The PSAs also encourage pregnant women and families to ask their health care provider about adequate screening upon birth of their child as well as the need for research into Congenital Heart Defect treatment. The PSAs direct everyone to [Insert Name of Organization and/or People Willing to Step Up And Get This Done’s website here] to learn more.
I don’t know about you, but I swear to my heavenly father, his son and the holy spirit if I had $2m dollars, this would be done. What it would be doing is simply what we don’t have, the public aware that our children are dying, they face an uncertain future and unless a foundation is formed or merged to take on this task, to educate the public — there are SO MANY PEOPLE SITTING AT HOME THAT HAVE NO IDEA HOW TO GET INVOLVED, AND MOST DON’T EVEN KNOW THIS HAPPENS. There are so many philanthropic people in our country that would jump on this, and they don’t know. President’s and CEO’s of companies aren’t watching TV with their family and see this, and then something happens to them, filled with the holy spirit they feel compelled and send an email, “I’d like to partner up with your oranization and DO MORE”. I know that the chapter’s of these National Organizations have done a tremendous job at bringing chapters like It’s My Heart: Detriot online, people are starting to get effected. But right now the fire is strong, we are motivated — can we continue to trudge along in this battle with the same results we’ve been getting? Is anyone really happy about the fact that we get 10x less funding than Autism? Maybe this is just me, maybe I feel like i’m doing nothing. Sure, Aiden’s story has brought A LOT of impact on a lot of people, he changed their lives in many unique ways — but I feel like making an impact on a few hundred to thousand people isn’t enough for me or for him.
Please don’t misinterpret that I think everyone isn’t doing enough, in fact I’m saying the opposite, we’re doing a ton, but are we really ONE in 100? It is my belief that if we as a community don’t together unite as ONE, we’re not going to achieve something that Autism has in the next 10 years…. and we wanted it done yesterday.
Is it going to take me quitting my job and relying on the charity of others to travel this country by foot door to door business to business to gain momentum for the task that lies ahead – or is there support from those in advocacy positions to rally behind one cause?
Please share your comments and thoughts, input on this matter is extremely important to me.