The Summer 2013 issue of Connective Issues is now available! You can read it here.
Marfan Foundation Urges "The Internship" to Take Marfan Syndrome Seriously. Read here for our response to the Marfan syndrome reference in the new movie.
Bienvenido a la Foundation Nacional de Marfan. Para ver hojas de datos sobre el síndrome de Marfan en español, haga
clic aquí. Para obtener información sobre la Conferencia de 2013 NMF en Los Angeles, CA, agosto 1 hasta 4, 2013 en español clic aquí.
Our 29th Annual Family Conference is August 1-4, 2013, in Los Angeles, CA. You can read our press release or register.
The Marfan Question Video Series is a collection of short 3 to 5 minute videos that answer frequently asked questions about Marfan syndrome. These "webisodes" feature real people whose lives are affected by Marfan syndrome, as well as expert doctors and surgeons.
Check out these videos now and get the answers to your commonly asked questions.
Adopt-A-School Project. There are many ways you can help raise awareness and, ultimately, save lives. One of them is the Adopt-A-School Project. The
Adopt-A-School Project is designed to raise awareness about Marfan syndrome and related disorders in our schools—among teachers, principals, coaches, school nurses, other faculty and staff, students and their families. The goal is two fold: to help identify children who have Marfan syndrome so they can get the care they need; and to ensure that these children receive the necessary accommodations to perform at their best.
New Fact Sheet Series: The Marfan Lung. This three fact sheet series includes information on how Marfan syndrome affects the lungs as well as specific information on sleep apnea and spontaneous pneumothorax.
Visit this and the rest of our fact sheet series including the cardiac, skeletal, eye and Loeys-Dietz series to get more information on these important issues.
New Resource, Marfan Syndrome: Need-To-Know Information for the Teacher, now available!
Download this free resource and print it or email the link to your child's teacher(s) today.
Please check the NMF Calendar for upcoming events
2013 NMF Annual Conference, Los Angeles, CA, August 1-4. Join us for exciting new programs as well as those programs you've come to expect and love; patient evaluations at the Conference Health Fair, special, age appropriate child (5-12 yr. olds), teen (13-18 yr. olds) and young adult (19-25 yr. olds) programs, and the adult general session, medical and psychosocial workshops. Scholarships are available. REGISTRATION IS NOW OPEN!
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:
06-10-13 Marfan Foundation urges "The Internship" to take Marfan Syndrome serious.
05-06-13 Our 29th Annual Family Conference is on August 1-4, 2013, in Los Angeles. You can read our press release or register.
04-09-13 On April 11, the National Marfan Foundation will celebrate the 13th Heartworks Gala in New York City. We will be honoring Cleveland Clinic Surgeon, Dr. Lars Svensson, and long-time Foundation supporters Scott and Amy Avitabile.
03-21-13 National Marfan Foundation established Alan Braverman Fund in honor of Director of Marfan Clinic at Washington University School of Medicine.
03-01-13 The National Marfan Foundation is honoring Dr. Marc Moon at the 5th Heartworks St. Louis, which is hosted by Dr. Alan Braverman and his wife, Rebecca. More than 300 are expected at the event at the Chase Park Plaza on March 2.
07-17-12 Northwestern Medicine and Ann & Robert H. Lurie Children's Hospital of Chicago to Host 28th Annual National Marfan Foundation Conference, August 2-5, 2012
05-07-12 Bloomberg Philanthropies Commits $5 Million Leadership Gift to NMF
04-10-12 Bay Shore-Brightwaters Public Library to Present In My Hands: A Story of Marfan Syndrome on May 12
04-10-12 Carolyn Levering named to National Health Council Board of Directors
03-19-12 New survey shows primary care doctor first to suspect Marfan syndrome in only 25 percent of cases
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
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.
Check out our NMF News Blog
Have Heart Campaign 2013
February is National Marfan Awareness Month. Show your support today.
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HW NYC13 Gala
The HeARTworks Gala is the NMF’s largest fundraising event of the year and since its inception, has raised more than $8 million support the foundation’s mission. This exciting evening begins with cocktails and a fabulous silent auction and proceeds with dinner, an awards presentation, live auction and entertainment. Various giving opportunities including sponsorships and tickets are still available.
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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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