National Marfan Conference 8/6/16

Evening Program
Getting ready for the Marfan walkathon.  

Listening to keynote speakers. Doctors speaking on the latest Marfan research and information. 


Losartin continues to show good promise for slowing aorta growth and strengthening the heart. We heard from Dr Dietz from John Hopkins, one of the leading researchers for Marfan syndrome. We also heard from Orthopedic specialists, heart specialists, genetic specialists, and many additional doctors. 

Daily picture by the Marfan wall. 

Robbie enjoyed another day of learning more information about Marfan Syndrome and hanging out with his Marfan friends. All the kids are very thin like he is and most are very tall. He is 5’11” and considered a short Marf. 

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