Bicuspid Aortic Foundation View From Here April 2008

I was honored to spend a few hours recently with a very special family, while all of them were being checked for bicuspid aortic valve disease. I was with them during the consultation, as they listened to the results of the imaging tests and described what they knew about BAVD and TAAD in their relatives.

Later, surrounded by this family at dinner that evening, I marvelled at their strength. It is a strength born from great sorrow and loss. There was someone missing, someone who should have been there with us. He died suddenly, never knowing about the bicuspid aortic valve and aneurysm in his chest.

Because of what happened to him, they were seaching for understanding of what they must do, knowledge to keep them safe from BAVD/TAAD. Sitting there with them, again I was thankful for the imaging that reveals the secrets inside the brain and chest. Medicine does not have all the answers today, but it is possible to look for signs of abnormality.

When their Mother spoke to me about this experience, she said that now each of them has a baseline. They know where they stand currently and have a reference point for the future. And they requested their reports and copies of their images for their own files.

This is an important aspect of the Foundation's work, equipping individuals and families with the knowledge to undergo baseline testing and maintain their personal medical records. You may find it helpful to visit a new page, Medical Records and You, that has video clips from the 2007 Conference on this topic.

This family suddenly lost someone young and strong. It is unthinkable that it should ever happen to them again. They are taking every step possible to prevent it. I hope that you and your family will too.

Proactively imaging ourselves and our family members
reveals the present and creates a baseline for the future.

It is an important step in
creating a climate of hope.

Sincerely,
Arlys Velebir
Chair, Board of Directors
Bicuspid Aortic Foundation

Contact Us
Bicuspid Aortic Foundation
30100 Town Center Drive, Suite O-299
Laguna Niguel, CA 92677

Telephone
Toll free in the US (888) 310-HOPE (4673)
or495-0027

Fax: (949) 606-0413

Email: contactus@bicuspidfoundation.com

The Bicuspid Aortic Foundation recognizes the importance of maintaining the privacy of individuals who use its web site.

In using the Bicuspid Aortic Foundation web site, you are agreeing to the terms of this privacy policy. If you do not wish to accept the terms of this privacy policy, please do not access the Bicuspid Aortic Foundation web site.

All personal information provided to the Bicuspid Aortic Foundation will be kept confidential within the Foundation, and will not be disclosed to any third party without the permission of the individual.

Email and messages sent through the web site are not secure. Therefore, personal information you transmit to the Bicuspid Aortic Foundation may be intercepted by others and is done at your own risk.

The Bicuspid Aortic Foundation may contact you regarding topics of interest. If you do not wish to receive such communications, you may contact the Bicuspid Aortic Foundation and indicate that you do not wish to receive them. If at a later time you again wish to receive such information, you may indicate that by contacting the Bicuspid Aortic Foundation.

The Bicuspid Aortic Foundation makes no representation whatsoever regarding the privacy policy of other web sites whose links are on the Bicuspid Foundation web site. Your usage of other web sites is entirely at your own risk. You should carefully read the privacy policies of all web sites that you visit.

Please contact the Bicuspid Aortic Foundation regarding any questions you may have about this policy.

Disclaimer

The information on the Bicuspid Aortic Foundation website is provided for general informational purposes only. This information is not professional, legal, or medical advice. Any medications, products, or treatment mentioned are presented as information only and do not constitute any recommendation, approval, or endorsement. Any information is general in nature and is not a substitute for medical care. You should contact a physician or other qualified medical professional for advice about all health-related conditions.

The Bicuspid Aortic Foundation, including its officers, directors, volunteers and any others acting on its behalf, individually and collectively, make no representations or warranties, expressed or implied, regarding the contents of this website, including its accuracy, completeness, or reliability.

Any links or references to other websites provided on the Bicuspid Aortic Foundation website are made available as a convenience only. The Bicuspid Aortic Foundation has not reviewed all of the websites linked to this website and is not responsible for the content of these sites or your use of them.