Connective Issues Spring 2018

MARFAN AWARENESS MONTH 2018

More than 2,000 people used our profile frame on Facebook and many shared facts on social media every day during Marfan Awareness Month.

There was unprecedented action from our Marfan and related disorders community in February, Marfan Awareness Month. Volunteers from coast to coast organized awareness events, held fundraisers, shared their stories with the media, and lit social media on fire with information about Marfan syndrome and related disorders. They took our #KnowFightWin campaign to heart and amplified their collective voice to create a brighter future for everyone living with these conditions. MELISSA KELLER, A 5TH GRADER FROM PROVIDENCE, RI, WHO HAS MARFAN, CREATED AN AWARENESS TABLE IN HER SCHOOL’S DINING HALL TO RAISE AWARENESS AND FUNDS DURING MARFAN AWARENESS MONTH. HER EFFORTS ALSO MADE NEWS IN THE LOCAL PAPER. WAY TO GET YOUR COMMUNITY TO HELP YOU #KNOWFIGHTWIN!

ANSLEY SIANO (8TH GRADE), OF HOLLY SPRINGS, NC, AND JORDAN HANNAN (6TH GRADE), OF CHAPEL HILL, NC, HELD A BAKE SALE AT THEIR SCHOOL ON FEBRUARY 28 FOR MARFAN AWARENESS MONTH AND RAISED $1,525 FOR THE FOUNDATION! THROUGH POSTERS IN THE SCHOOL AND FLYERS THEY SENT HOME, THEY ALSO

EDUCATED A LOT OF PEOPLE ABOUT MARFAN AND RELATED DISORDERS. THAT’S HOW TO #KNOWFIGHTWIN!

The Marfan Foundation encourages our community to help us #knowfightwin all year long! To get involved, please contact Suśan Sobers, director of volunteer engagement, ssobers@marfan.org or 516-883-8712, ext. 116.

STEVE XYDAS, MD, CHIEF OF THE COLUMBIA UNIVERSITY DIVISION OF CARDIAC AND THORACIC SURGERY AT MOUNT SINAI MEDICAL CENTER ON MIAMI BEACH, HELPED US KICK OFF #KNOWFIGHTWIN AT THE SOUTH FLORIDA WALK FOR VICTORY.

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