Connective Issues Winter 2019

“Somewhere, something incredible is waiting to be known.” – Carl Sagan because we know a number of medical breakthroughs for people with Marfan syndrome and related conditions are on the horizon, 40% of our overall expenses this past

Contents RESEARCH & PROGRESS 3–8 RELATED CONDITIONS 9 WALK FOR VICTORY 10 ANNUAL CONFERENCE 11 EDUCATION/AWARENESS 12–13 CREATING CONNECTIONS 14 TRIBUTES 15 resource for families and healthcare providers, and raise public awareness. We will not rest until we have achieved victory. Learn more and get involved at Marfan.org . The Marfan Foundation creates a brighter future for everyone living with Marfan syndrome and related conditions. We work tirelessly to advance research, serve as a

year went to research initiatives and grants. we funded a total of $1.5 million in research, including seven new grants, and four of those went to first time applicants. Additionally, we are funding the AVooS Valve Sparing Trial which looks at the results of the valve-sparing aortic root replacement operation and composite valve graft operation through 2021. in addition to our traditional research grant program, we launched our backpack Health patient registry last May and are now in 48 countries with more than 850 individuals with Marfan and related conditions enrolled. The end goal is to have thousands of people enrolled with de-identified aggre- gated data available to researchers, which will ultimately lead to increased understanding of these conditions and enhanced diagnosis and treatment. This support is all made possible by a number of very generous donors who share our enthusiasm for the vital importance of research. Finally, i would like to draw your attention to The Marfan Foundation taking the lead role in the global Aortic disease Awareness day on September 19. Thanks to a wonderful opportunity presented by Timo Söderlund, of Sweden, we are working towards uniting the international community, accelerating awareness, and saving lives around the world. Thank you, Timo, for your leadership and the trust you have placed in The Marfan Foundation. we are honored to follow in your footsteps and to have you as our partner. All the best for good health and wonderful moments in the year ahead.

Sincerely,

Michael weamer president & Ceo

CONNECTIVE ISSUES winTer 2019 VoLuMe 38 | nuMber 1

“As of today, my artificial heart valve has been helping me blow out birthday candles for more than 30 years.” – Chris Heaney, Marfan Volunteer Leader Chris received his heart valve in 1984 and lives an energetic life with his partner, Sayler, because of research advances over the last 25 years. And, thanks to your support and confidence, The Marfan Foundation remains in the forefront of funding and promoting the critical need for research on Marfan syndrome and related conditions.

THe MArFAn FoundATion 22 MAnHASSeT AVenue porT wASHingTon, ny 11050 516-883-8712 | 800-8-MArFAn MArFAn.org

CoVer: KATie dAMMAnn, oF roSeburg, or, wHo iS inVoLVed in SeVerAL reSeArCH STudieS To idenTiFy Her exACT gene MuTATion.

THiS iSSue oF ConneCtive issues iS MAde poSSibLe THrougH A grAnT FroM bLooMberg pHiLAnTHropieS And THe CHu And CHAn FoundATion.

2 Marfan.org