The Winter 2012 Issue of Connective Issues Is Now Available Connective Issues is the NMF's acclaimed newsletter, published three times per year -- in the Fall, Winter and Spring.  Connective Issues is your ticket to the most current information about the NMF, Marfan syndrome and related disorders, and the people who make up this wonderful and vibrant community.  Click here to find out your options for receiving Connective Issues.  You can also view additional content in Connective Issues Extras.

 

2012 Hero with a Heart Award Kevin Blinder, MD, Professor of Clinical Ophthalmology and Visual Sciences, Washington University School of Medicine, will receive a 2012 Hero with a Heart Award from the National Marfan Foundation at Heartworks St. Louis.  The gala benefit for the NMF, co-hosted by NMF Professional Advisory Board Chair Alan Braverman, MD, and his wife, Rebecca, will be held on March 3 at the Chase Park Plaza.  Read more about Heartworks St. Louis here.

 

Introducing MarfanDX The NMF has just announced the launch of a new mobile site - MarfanDX - to facilitate the diagnosis of Marfan syndrome and related disorders.  Based on the revised diagnostic criteria for Marfan syndrome published last year, the site is compatible with Droid and iPhone smartphones.  It puts the Marfan syndrome diagnosis directly into the hands of doctors, facilitating an accurate and timely diagnosis and appropriate management.  For more information, click here.  Read the press release.

 

Please check the NMF Calendar for upcoming events

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• Attend workshops and medical presentations by world-renowned doctors and researchers.
• Make an appointment for a medical assessment at the Marfan Clinic (by appointment only).
• Bring your children and teens for a special fun-filled and educational weekend.
•  Participate in the new Young Adults Program.
• Share experiences with others in the supportive environment that is unique to NMF conferences.

For further information and online registration, visit the NMF web site at www.marfan.org starting in February, 2012.

 

NMF Media Contact Information:

Thank you for your interest in Marfan syndrome. For immediate assistance, media may contact Eileen Masciale, Consulting Director of Communications, 631-665-2163, publicity@marfan.org

We can arrange interviews with leading experts on Marfan syndrome, as well as with individuals affected by the disorder. Electronic photographs are also available.

 

Media Kit:
Marfan Syndrome Q & A
Life Expectancy
Aortic Dissection: Facts & Figures

 

Press Releases:

 

01-23-12 Kevin Blinder, MD, Washington University School of Medicine, to be Honored at Heartworks St. Louis Gala, March 3rd

10-24-11 12th Annual Tommy Tant Memorial Surf Classic Presented by Nautica To Raise Awareness of Marfan Syndrome and Aortic Disease

06-22-11 Shriners Hospitals for Children and Oregon Health & Science University to Host 27th Annual National Marfan Foundation Conference, July 14-17, 2011

04-15-11 National Marfan Foundation Launches Mobile Site to Put Marfan Syndrome Diagnosis Directly into the Hands of Physicians.

04-05-11 National Marfan Foundation Benefit to be Held on April 7 at Cipriani 42nd Street.

02-01-11 Keith Bridwell, MD, Chief of Spine Surgery in the Department of Orthopaedic Surgery and Asa C. and Dorothy W. Jones Professor of Orthopaedic Surgery, and Lawrence Lenke, MD, Jerome J. Gilden Endowed Professor of Orthopaedic Surgery, Washington University School of Medicine, are the 2011 recipients of the National Marfan Foundation’s Hero with a Heart Awards.

08-12-10 Alan Braverman, MD, named chair of the National Marfan Foundation's Professional Advisory Board

07-01-10 New Diagnostic Criteria for Marfan Syndrome Published in Journal of Medical Genetics: New Guidelines Facilitate Accurate Diagnosis of Life-Threatening – but Treatable – Genetic Disorder

06-14-10 Baylor College of Medicine and University of Texas Science Center at Houston to Host 26th Annual National Marfan Foundation Conference

04-05-10 National Marfan Foundation Benefit to be Held on April 22 at Cipriani 42nd Street

03-16-10 New Coalition Launches Multi-Faceted Campaign to Maximize Impact of New Aortic Disease Diagnosis and Treatment Guidelines from American Heart Association, American College of Cardiology and Nine Other Professional Organizations;  TAD Coalition Announces “Ritter Rules” to Heighten Awareness of Risk Factors, Symptoms, Urgency and Diagnosis of Aortic Dissection

03-16-10 From AHA/ACC: New Guidelines Aim to Prevent Unnecessary Death from Thoracic Aortic Disease;  Multidisciplinary team of experts weighs in on diagnosis and management

02-01-10 February is National Marfan Awareness Month- Clinical Trial Participants Still Needeed

01-21-10 Gregorio Sicard, MD, to be Honored at Heartworks St. Louis Gala, March 6

07-13-09 Mayo Clinic to host 25th Annual National Marfan Foundation Conference, Aug 6-9, 2009

02-02-09 RENT: Filmed Live on Broadway Helps Raise Awareness and Saves Lives

02-01-09 February is National Marfan Awareness Month

10-06-08 NIH Launches New Web Site for Parents on Medical Research Studies for Children

08-21-08 FoxNews.com posted an important article about Marfan syndrome awareness and Michael Phelps on its website

Archived Press Releases

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Pulitzer Prize-winning Series on Aortic Aneurysm and Dissection-
Kevin Helliker and Thomas M. Burton, reporters at The Wall Street Journal, were awarded the 2004 Pulitzer Prize for Explanatory Reporting for uncovering and explaining the surprising prevalence of aneurysms. The entire series can be accessed on The Wall Street Journal Online.

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Check out our NMF News Blog

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Have Heart 2012 Campaign
February is National Marfan Awareness Month and we’re trying to raise $60,000 in our 2012 Annual Have Heart Campaign to expand our outreach and education work all year long.
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Happy Holidays 2011
We wish you health and happiness in the new year. Start 2012 generously and donate to the National Marfan Foundation.
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Emergency Information Packet
Be prepared! New tool helps you compile infomation you will need in the event of an emergency.
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