Organization Details:

philosophy

FFARR's philosophy:-

1. Minimal fundraising expenses.
   
   
2. Minimal personal running expenses.
   
   
3. Maximum information for the public on aneurysm rupture prediction and prevention.
   
   
4. Maximum pressure on scientists and clinicians to make meaningful clinical advances in rupture prediction and prevention.

Description and/or History:
FFARR is not interested in aneurysm etiology or prevention. Stopping people from getting aneurysms in the first place seems to us to be secondary to the here-and-now of dealing with existing aneurysms. So we are deeply concerned with promoting urgent scientific and clinical advances in predicting, preventing and repairing aneurysm rupture -- all aneurysms, not just intra-cranial or aortic ones. FFARR is not just yet another interesting charity. We have a deeply inquiring, critical, skeptical, independent, substantive mind of our own and we are using it to try to help save lives now.
Origins

Why are we so interested in aneurysm rupture? In January 2004, Richard J. Astor took the initiative to:-

• co-found the Foundation -- with Paul Edelman and Dave Tilson

and

• embark on writing Aneurysm Rupture: Types, Prediction and Prevention

principally to help his father, Alec. Alec died peacefully in his sleep August 3, 2006 at the age of 91. At the time of his death, he was on his third abdominal aneurysm. His first, an infrarenal abdominal aortic aneurysm, had been resected by open (abdominal laparotomy) surgery in 1989. His second, a left common iliac aneurysm, was resected by open surgery in 1997. His third was a right common iliac aneurysm. He was deemed a poor surgical risk because of co-morbidities. The aneurysm might rupture. What to do?

In researching treatment options, Richard found that the art and science of aneurysm rupture prediction and prevention are in a primitive state, and some scientific and clinical behavior is materially dysfunctional. For example:

(1) There appears to be no coherent, disciplinarily integrated, clinically proven science to PREDICT how, when, where, or why an aneurysm of a particular type in a particular body location will rupture. That art and science appear to have been traditionally suppressed by the surgical mantra of "mere diameter plus symptoms", which obviates the need to do any predicting in a low-surgical-risk patient, and marginalises the high-surgical-risk patient. How to rationally and reliably predict whether, how, when, where and why the aneurysm, if ever, will reach a critical state?

Until now, there has not even been an international database of rupture by type, how, when, where and why. There is now. Or a common taxonomy for aneurysms by type or location. There is now. Or even terms to describe an aneurysm that ruptures without expanding, an aneurysm that expands without rupturing, or a vessel that ruptures without becoming aneurysmal. There are now.

(2) There appears to be no clinically established method other than (laparotomic / minimal incision / laparoscopic / endovascular) surgery to PREVENT rupture. So the dilemma here is: what is the best anti-rupture therapy that will not put the bad-surgical-risk patient at greater risk than the disease? Until now, there appears to have been no coordination between surgeons, radiologists, pharmacologists and other disciplines on anti-rupture therapeutics. There is now.

(3) Scientists and clinicians in various relevant disciplines are working on prediction and prevention, but they are not always talking to each other -- sometimes on cultural / turf grounds -- and their work is not coordinated centrally. Until now, there has not even been an international multidisciplinary initiative to bring them all together and make them aware of each other's work. There is now.



Contact person: Richard Astor, Executive Director, (email)

Address:


Foundation For Aneurysm Rupture Research, Inc., C/o Paul Edelman 100 Park Avenue, 18th Floor New York, NY 10017 (See a map)


Web Site: http://www.ffarr.org

Last updated on April 6, 2009