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Steve Catoe Memorial Fund

Steve Catoe was a long-time ACHA message board moderator and advocacy volunteer, and the inveterate blogger at his “Funky Heart” site.

The Steve Catoe Memorial Fund was created to honor Steve’s memory and keep alive his passion for helping improve the lives of heart defect patients through peer support and advocacy. Donations to the Steve Catoe Memorial Fund will support ACHA’s legislative advocacy efforts and online support services including our discussion forum and blog.

The following remarks were given at Steve Catoe's Memorial Service on December 1, 2010 by ACHA President/CEO Amy Verstappen:

I want to tell you a little about my dear friend Steve. I can’t remember where or when I first encountered Steve, but I do remember what he said - “Don’t take any wooden nickels,” and what he handed me - a wooden nickel, emblazoned with his diagnosis and information about heart disease. And what struck me most was: here is a person who wanted to give back. In my job as the president of the Adult Congenital Heart Association, it is my privilege to meet many people around the country living with serious congenital heart problems. Often their first questions to me are about themselves – their problems, their needs, and how ACHA can help them manage their difficult situation. Not Steve. All he wanted to know is: how can I help?

So we put him to work – early, and often. At this time, Steve had already established himself as a tireless “Warrior” for all of us living with congenital heart disease, through his Funky Heart blog and online connections. Steve quickly started helping read every one of the hundreds of messages posted on ACHA’s online forum, greeting new members, and making sure that every person there received the compassionate response and accurate information they deserved. It was immediately apparent that behind Steve’s “Aw shucks” demeanor lay a brilliant mind, capable of taking the most complicated medical information and translating it into a down-home style that anyone could understand. I also saw the effect that his calm, upbeat presence had on others in crisis. Steve was just great at making people feel like, if he could do it, they could do it – and leading the way.

But Steve’s vision was not just to give people hope and comfort – it was to change the system to ensure that every person born with congenital heart disease could live a long and healthy life. Despite freezing rain, in 2007, Steve flew to Washington DC to meet with his lawmakers to persuade them to pass the Congenital Heart Futures Act, a law mandating more research and education to improve long-term outcomes for those of us born with this country’s No. 1 birth defect. It was a long day, filled with long walks down long corridors, but Steve just charged along, charming every legislative aid with his southern graces, hiding the fact that, as someone living life permanently breathless, each conversation must have taken increasing effort. This spring I again got to lobby with Steve – this time pushing for funding for the legislation he helped pass. Steve’s failing health now made walking even more difficult – but rather than complain, Steve designated himself Congenital Heart Lobby’s day’s official “tweeter,” interviewing attendees and sending out blogs, Facebook updates, and tweets trumpeting the day’s accomplishments.

When ACHA needed someone to testify on why the Social Security benefits system does not work well for congenital heart patients, we turned to Steve. I had to talk him into doing it, since Steve loved to stress the positive, and focus on all that he could do despite his disability. But what we really needed him to do this time to describe the negatives as well, and make the SSI staffers understand what it was like to have to struggle for each breath and each step. The room was filled with more than 200 mid-level bureaucrats, all visibly bored to be wasting their day at such useless proceedings. But as Steve rose and began telling his story of living life with his funky plumbing, his combination of humor, honesty, and eloquence brought them to tears and a standing ovation. This fall, the Institute of Medicine recommended social security rule changes for those of us living with CHD that started with Steve’s gentle tale of living with half a heart.

Thanks to his computer, Steve was able to touch the hearts and lives of congenital heart patients and families all around the country. But even as Steve travelled widely, he always brought along a little piece of you all. I learned about how much Steve loved not just US history, but the history of his region, and how he volunteered at the local historical society. I heard about this church community, and how much it meant to Steve and his family. I heard about Steve’s family – funny things his nieces said, how sad he was to lose his precious grandmother. And I heard lots about his parents, and it was clear that this lovely man was part of a loving community and a loving family, that enabled him to grow despite the many reasons he had to shrink. He could not have made the difference he did to so many people without you all holding and cherishing him in your hearts.

I can’t tell you how sad and shocked I was when I got the call that Steve had left us – I had just exchanged emails with him in the days before, and had been exceptionally inspired by his recent blogs about the need for congenital heart community to go beyond hope into action: action to establish the funding and research to vanquish the kinds of cardiac woes that still start killing congenital heart patients once they reach their twenties and thirties. ACHA had just invited Steve to be our featured blogger at our new website, because we knew that there was no one better than Steve for inspiring our community to action. What comforts me is that I know he died doing what he loved – at his computer, having just posted his last Funky Heart blog.