The Marfan Foundation: May 2022

The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.
Watch this short video to learn about our impact.
For more information, please visit Marfan.org.

[@janellee250]

I was diagnosed at age 5 and looking back now through all my surgeries including a life saving descending aortic dissection, the online community that was created has always given me a safe guard, a comrade almost and the other successful stories or surgeries done before mine really give me a peace of mind and a comfort knowing what’s ahead. Little funny story from when I was approx 2-3 yrs, Marfans was never mentioned even though now knowing I had very clear symptoms, it just showed how little it was discussed among the medical field otherwise when a doctor was shown my very large protruding ribs in the front from severe scoliosis, said doctor wouldn’t have said to my mom, “I believe she has “floating ribs.” (Yes this was true and we thankfully can laugh now about it) but also there was my pectus excavatum that no answers could be given at THAT time. Thankfully we landed at The Scottish Rite Hospital for children and God could not have put us in better hands and thus my Marfans journey began and I’m now 46 with lots of stories in my daily journal. I couldn’t be more thankful to the Marfans Foundation for all they continue to do on our behalf and people like Mr. Jon Rodis who happily gives assistance with disability questions should you need it and so many more.
Just THANK YOU from the very bottom of my Dacron ascending root through my St. Jude Valve up to the top of my artificially built aortic arch and finally to the bottom of my descending aortic stent placed, to help close up my dissection. AND THERES A LOT OF LOVE STITCHED INTO ALL THAT WORK and not one day do I take for granted, pain or no pain! Love you guys and gals!! Janel Mobley Lee

[@michelehaught7798]

That’s my baby at the end Genesis