Monday, November 5, 2012

Bicuspid Aortic Valves - Our Time Has Come!

Dr. Sharo Raissi, Los Angeles,  Dr. Arturo Evangelista, Barcelona,  Arlys Velebir, Laguna Niguel,  Dr. Simon Body, Boston
An Extraordinary Lunch 
It must have looked so ordinary - four people around a table in Los Angeles, having lunch together.To the casual observer, there was nothing to suggest anything special or unusual. The server may well have wondered at how little attention was given to menus, how intensely they spoke together, and how long they lingered there.  Tucked away in the very back of the restaurant, this was no ordinary group. This was no ordinary lunch.

This Is Our Time!
From different backgrounds, different parts of the world, they had carefully planned to meet here. Just what were they talking about, perhaps even plotting? Something extremely important had brought them together -  what was it? Nothing less than an all out assault on a source of great human suffering - the bicuspid aortic valve. After centuries of pain and suffering, the time is right. The time of the bicuspid aortic valve has come!

Who Were These Four People?
Dr. Simon Body, an anesthesiologist, practices at Brigham and Women's in Boston. Dr. Arturo Evangelista practices cardiology in Barcelona, Spain. Dr. Sharo Raissi, a cardiothoracic surgeon in Los Angeles, chairs the Scientific Advisory Board of the Bicuspid Aortic Foundation. I was deeply touched by their humility, compassion, and courage in the face of a complex condition for which there are no easy answers. 

I was the fourth person there, at that table, in your place - you, the millions of families everywhere with BAV. As I sat there, I thought about so many - my beloved husband, our family, and the great world-wide family with whom we are linked through this common genetic heart defect. I told them some of your stories - the tragedy and the triumph. 

The First International Consortium on BAV
At the Foundation, we speak of the world-wide tsunami - the millions with BAV and their untold number of relatives with aneurysms. Yes, it may be a tsunami, but there is a tremendous force gathering to address it. This marks the first time that centers are collaborating internationally, organizing together to address BAV. Participation in this great work is not a light thing - it calls for commitment over many years and unwavering determination to find answers. There is no misconception that it will be easy, and yet there is great enthusiasm among those signing on to this effort.

Finding the Answers
Think of all the unanswered questions there are about bicuspid aortic valves and the families in which they occur. Yes, we live in a day when testing, surgery, and blood pressure medications are saving lives. But there is still a tremendous, unmet need in BAV families.

Most of the mystery, and far too much misery, remain.

We Cannot Change the Past - Let's Change the Future!
For many of us, if there were a time machine, we would return to a time before our loved one was injured, before we lost them. We would not ask for extra time, just enough to get them the help they needed. For others, even if we could go back in time, there would be no help. Some things are still beyond our reach today.

We cannot go back.

But we can do something. 

We can change the future.

This is an exciting time. We need your help to change the future. In upcoming posts, we will let you know how you can help.

Best wishes to you and your family,
Arlys Velebir 
President and Chairman
Bicuspid Aortic Foundation

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