Receiving Connective Issues Has Never Been Easier
Connective Issues is the National Marfan Foundation's acclaimed newletter 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 virbant community. Find out your options for receiving Connective Issues. You can also view additional content in the Winter 2010 Supplement.
Alan Braverman, MD, Named Chair of the NMF’s Professional Advisory Board
Alan Braverman, MD, Director of the Marfan Syndrome Clinic at Washington University Medical Center in St. Louis, has been named Chair of the NMF’s Professional Advisory Board (PAB). Dr. Braverman, who has been a valuable member of the PAB since 1999, is both professionally and personally committed to the NMF; he lost his father to Marfan syndrome and has a brother and nephew who are affected with the condition. Read the press release.
2010 Revised Ghent Nosology for Marfan Syndrome
The diagnostic criteria for Marfan syndrome have been revised based on scientific meeting of Marfan syndrome specialists. Instructions for healthcare providers are now available. Read the press release.
Image-ination Photo Contest: We Have a Winner!
Over 90 teens attended the 2010 NMF Conference in Houston, Texas. On Friday, July 9th, 2010, the teen group was challenged by the NMF and Positive Exposure, a non-profit organization that “challenges the stigma associated with difference by celebrating the beauty and richness of human diversity" to take photos of each other throughout the Conference weekend which captured the beauty and richness of Marfan syndrome and related disorders to submit to the Image-ination Photo Contest. 15 photos were submitted. 197 people voted and the winner is Jared Zimmerman. Click here to see the winning photo as well as the 2nd and 3rd place photos.
Healthcare Reform Bill
Congress passed the Patient Protection and Affordable Care Act, and President Obama signed it on March 23, 2010. Find out the timeline for implementation and what it might mean for the Marfan community.
SAVE THE DATE: 27th Annual Conference: July 14-17, 2011, Portland, Oregon. 
Make an appointment for a medical assessment at the Marfan and Related Disorders Clinic. Bring your children and teens for a special fun-filled and educational weekend. Participate in a newly expanded program for young adults. Share experiences with others in the supportive environment that is unique to NMF conferences. See what you've been missing, view videos of the 2010 Conference, child and teen programs and medical assessments. See You in Portland!
Please Check the NMF Calendar for upcoming events
8th International Symposium on Marfan Syndrome and Related Disorders. September 11-14, 2010, for Researchers and Clinicians [information]
27th Annual Conference: July 14-17, 2011, Portland, Oregon
Join the NMF in Portland, Oregon for the 27th Annual Conference. The annual Conference features special programs for adults, children (ages 5-12), and teens (ages 13-19). The 27th Conference marks the inauguration of the new Young Adult program which will feature special social events and workshops for young adults throughout the Conference. View a video of the 26th Annual Conference in Houston, Texas and see all the fun and education you are missing. Learn more about the child and teen programs, view a video recap of the last 4 years (2007-2010) Conference child and teen programs. Considering registering for a patient assessment this year? Get a better sense of what the patient assessments are like, view a video of patients at their appointments. See you in Portland! Check back here in Winter for details on the 2011 Conference.
NMF Media Contact Information:
Thank you for your interest in Marfan syndrome. For immediate assistance, media may contact Eileen Masciale, 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:
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
