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Marfan Syndrome News in 2006


Atenolol vs Losartan Clinical Trial Update - The Pediatric Heart Network is very excited about this upcoming clinical trial and is working hard to finalize study drug issues and obtain the required approvals from the FDA and individual trial sites. We think enrollment will begin in late December or early January, 2007.

You can find information about the trial on the Pediatric Heart Network website at The website has brochures about the trial, including an overview of what will happen during the trial. The website also has at this link a list of the trial sites and whom to contact at each site. The attached WORD file is also a list of the trial sites with contact information.

At this time you may select the center of your choice and call the contact person for more information. By contacting the site now, the research team will know you are interested in being in the trial. They will contact you when the trial is ready to start actual enrollment.

Each trial site will handle all enrollment activities. The research team at the site of your choice will help decide whether you or your child is eligible to participate and will answer all of your questions about the trial.

When the 18 centers are ready to accept enrollment, the NMF will mail you another update and will also put information on the NMF website.

We know that many of you are eager to see the clinical trial begin and we look forward to a successful clinical trial.

NMF Network


National Marfan Foundation Newsletter Request for NMF Volunteers in TX, TN, and IL:

As you may know, the National Marfan Foundation regularly travels to medical conferences and has a booth in the exhibit hall. This affords the NMF a great opportunity to meet with health professionals involved in diagnosing and treating Marfan syndrome while they are in "learning mode." We generally have an NMF staff person on site working with local volunteers to staff the booth for the duration of the conference.

We have three such exhibits coming up, and are currently seeking well spoken individuals who are knowledgeable about Marfan syndrome who are able help out. People who have done this in the past have commented that it is a great way to see up close some of the great work we are doing to educate the medical community about Marfan syndrome and the NMF. If you are available for any of the conferences listed below, please contact me A.S.A.P. to see if this opportunity may be a good match for you. Please keep in mind that we may have to limit the number of volunteers for any given time-- I will create a schedule based on response and availability. (Sorry, no one under 18 years old is allowed in most exhibit halls.)

Emergency Nurses Association
San Antonio, TX
Thursday, September 14th, 4-7pm
Friday, September 15th, 9am – 1pm
Saturday, September 16th, 9am – 1pm

National Society of Genetic Counselors
Nashville, TN
Friday, November 10th, 6:30-8:30p
Saturday, November 11th, 11a-5p
Sunday, November 12th, 10a-4p
Monday, November 13th, 10a-2:30p

American Heart Association
Chicago, IL
Sunday, November 12th, 9a-5p
Monday, November 13th, 9a-5p
Tuesday, November 14th, 9a-5p

If you are available during any of the times listed above, and are within driving distance of any of the cities, please let me know. I would be happy to answer any questions about the requirements for volunteers.

Jonathan Martin, MS
Director of Education and Public Awareness Programs
National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050
(800) 8-MARFAN or (516) 883-8712 x. 16


Another Marfan In The News Update: - The Marfan syndrome segment on Paula Zahn Now (CNN) is now scheduled for Wednesday, May 17. The program airs from 8-9 Eastern time. Check local listings.

It was bumped from Monday night because of the president's speech on immigration.*

Eileen Masciale

Director of Communications
National Marfan Foundation


Marfan In The News Update: - Good morning. I learned late yesterday that the segment will not air on CNN tonight. Instead, it may run tomorrow night (May 12) or Monday night (May 15). The producer is pushing for Monday night. I will let you know if this changes yet again.*

Eileen Masciale

Director of Communications
National Marfan Foundation


Marfan In The News - From a recent e-mail by Eileen Masciale, Director of Communications, National Marfan Foundation - "The" Marfan syndrome will be featured on a segment on CNN’s Paula Zahn Now, which airs at 8 pm Eastern (check local listings for time in your area). Those featured in the segment include NMF members Karen and Michael Murray (New York), the Nemchek family (California) and Dr. Hal Dietz (Johns Hopkins). The NMF is grateful for all the time and effort these individuals/families dedicated to the shooting of this segment.

As of today, the segment is scheduled to air on Thursday night, May 11. However, this has been changing and still can change over the next few days. We will notify you of any changes, if possible.

Check your listings, set your TIVO or your VCR.

We anticipate a great response to this segment and hope we reach a lot of people who can benefit from the NMF’s support, information and research. Please tune in!*


NMF News: Important Breakthrough Research for Marfan Syndrome - The National Marfan Foundation (NMF) is excited to announce an important breakthrough in Marfan research which was published yesterday in Science.

Scientists at Johns Hopkins have used a blood pressure medicine already on the market, losartan (Cozaar), to prevent a potentially fatal weakening of arteries in mice with Marfan syndrome. The findings are considered a breakthrough discovery because they are the first to identify a drug that can prevent Marfan syndrome's most life-threatening complications from developing and potentially reverse the damage already done. The NMF is proud to have been one of the funders for this study.

Based on the successful studies in the mouse models, the researchers and the NMF have worked with the National Heart, Lung and Blood Institute (NHLBI) and its affiliated network of hospitals in the Pediatric Heart Health Network to begin a clinical trial for people with Marfan syndrome, which is expected to start in the fall. The NMF has promised to collaborate with NHLBI on patient recruitment and support throughout this trial. In addition, the NMF would like to support complementary studies to the clinical trial to explore potential effects on other body systems.

The NMF is very excited about these findings and we are eager to begin the clinical trial this fall. Please visit the NMF website HERE for more information about the clinical trial and how you can participate. If you have any questions or would like to help the NMF financially support these efforts please contact Dr. Josephine Grima at the NMF at

We will be sure to keep you posted of any progress made.

Carolyn Levering
President & CEO
National Marfan Foundation

"What We Know And Don’t Know About Valve-Sparing Aortic Root Replacement in Patients with the Marfan Syndrome" an article by D. Craig Miller, M.D. Professor of Cardiovascular Surgery, Stanford University Medical School, Stanford, California USA.*

*These sites have been quoted directly as I believe what they say about their sites or they already know what to say, better than I do.
These names and logos belong to and are copyrighted or trademarked by the site owners.

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