Three Events, One Mission: To Eradicate Congenital Heart Disease

Steve Catoe had a personality just like his blog "Adventures of a Funky Heart". In his blog he wrote about serious issues that people have to face while living with congenital heart defects, but always left you smiling with his sense of humor. In his life he fought an extremely tough battle with his heart defect, Hypoplastic Right Heart Syndrome, but kept everyone around him smiling with his incredibly positive outlook on life.

I can't find the appropriate words to describe Steve. He had an amazing love and feelings for all children and adults that were, in his words, "Cardiac Kids" or "Heart Warriors". He had extreme care and appreciation for all "Heart Moms" and "Heart Dads" who battle the battles with their Cardiac Kids and who are their voice. When he would talk about the appreciation he had for Heart Moms and Dads his voice would crack.

Steve died a little over two months ago at the age of 44. I only met Steve one time, but I read his blog every time he would enter a new post. I miss Steve.

He wrote a blog two days before he died that has been ringing in my head ever since.

"Awareness is not an endpoint for the Heart Defect community. What good is awareness if it doesn't bring people to action... It's time to declare war on congenital heart defects. All out, bare knuckle, unrestricted mortal combat... 
THE PLAN:

POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.


THE GOAL: To eradicate Congenital Heart Disease.


THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.

So lets put our heads together... It will be up to us to not only do the fund-raising, but to be the first ones to give – give our money, give our effort, and give our time. We have to gather the resources, fund the research, educate the public and lead the charge. If we don’t support our own cause, why should anyone else support it?"


This summer I will be putting my blood, sweat, and tears into raising money for research. My weapon is endurance athletics.

I will be starting with Bike4theCHF, a cross country bicycle ride with Nick and Jeni (HLHS) Busta. We will be cycling at a rate of nearly 100 miles a day in an effort to fund as much research as possible. The ride will start in San Francisco June 1st and end in New York City July 16th.

August 28th, a little over a month after our finish, I will be taking on my first ever Ironman- Ironman Louisville. An Ironman is a 2.4 mile swim, 112 mile bike, and a 26.2 mile run.




Then, October 9th, I will be running in the Chicago Marathon with my little sister, Astrid.

I need your help in these events. Here's how you can help.

1. Get involved with Bike4theCHF: http://www.bike4thechf.org/donate-or-register/ by riding or donating. If you would like a name of someone affected by a CHD's name on the bike, donate or raise $100 here (http://www.active.com/donate/bike4thechfnames). All money donated goes to The Children's Heart Foundation.
2. Let me know if you or your company would like to be featured in one of these events through a partnership with The Children's Heart Foundation. (Phone: 727-421-9487, or e-mail nmatson@childrensheartfoundation.org).
3. Register for the Bank of America Chicago Marathon for CHF (Contact clarson@childrensheartfoundation.org)
4. Run, walk, bike, swim for CHF: http://www.active.com/donate/thechfathletics

I share the same goal as Steve. Hope is not enough. Awareness is not enough. We need action.

This is the research that The Children's Heart Foundation was able to fund from 2010. The more we raise- the more we fund. Let's make 2011 huge and get one step closer to Steve Catoe's goal: To eradicate Congenital Heart Disease!

The Relation of Regional Brain Structure to Long-term Development and Behavior in d-TGA Patients

Computationally Guided Design of Biodegradable Drug Eluting Stents for the Treatment and Reversal of Vascular Stenoses in Children with Congenital Heart Defects

“The role of ETS-1 in the Neural Crest in Cardiac Development and Disease”

Fontan Conversion/Arrhythmia Surgery Long-term Database

“Creation of a Visual Encyclopedia Illustrating the Terms and Definitions of The International Paediatric and Congenital Cardiac Code, a system of nomenclature developed by The International Society for Nomenclature of Paediatric and CHD