Connective Issues Spring 2023

The Passing of Two Former Foundation Leaders

around the world. She advocated, educated, nudged, and did whatever she could to generate public awareness, catalyze research, and activate

In December 2022, The Marfan Foundation lost two of our former volunteer leaders who were instrumental to our founding and our growth, our Chair Emeritus,

Priscilla Ciccariello, and former Board President, Cheryl Williams. Priscilla began leading The Marfan Foundation shortly after it was founded in 1981. Her oldest son had died suddenly from an aortic dissection while at college in 1969. Marfan syndrome, which had not been previously diagnosed, was identified as the underlying cause. Then, the family learned that Priscilla’s husband, Charlie, had Marfan

others, whether they were leading scientists, expert physicians, or government representatives. Cheryl Williams joined the Foundation’s Board of Directors as President in 1987. She also served a stint as Vice President and as Chair of our National Volunteer Network. From 2007-2010, she was a Board Advisor. Cheryl was instrumental in creating public awareness for Marfan syndrome and helped drive

 Cheryl Williams, far left, and Priscilla Ciccariello, far right, with former Board members Steve Marpman and Jeanette Navia at a Board retreat at our Port Washington, NY, headquarters in 2002.

as did two of her remaining six sons, Peter and John. Priscilla’s training in library science, plus her innate resourcefulness, determination, and vision enabled her to be the force behind The Marfan Foundation. Throughout her life, she remained committed to the Foundation’s three-pronged mission, knowing that education, support, and research were all crucial for a ff ected people and their families. Priscilla became known internationally as the driving force for the Marfan community, connecting researchers, volunteer organizations, and families

our emergency medicine programming in the 1990s. A constant force in the New York City support group, Cheryl was often the go-to person for people who were newly diagnosed. She was a constant presence at our annual Conference until her health prevented her from attending. Like Priscilla, she was a guiding force in the early days of the Foundation and played a critical role in our growth. The Foundation extends its deepest sympathies to the family and friends of Priscilla and Cheryl. Their legacy at The Marfan Foundation will live on forever.

Ready, Set, Run for Team Victory…at Disney! Let the magic of Disney and your passion for our

Choose Your Run:  5K – November 3: This Alice in Wonderland-themed 5K takes runners on a mad dash through the kookiest tea party around. Hosted by Alice, the Mad Hatter, and all their friends, athletes will find that nothing beats a well earned medal to celebrate an un-birthday!  10K – November 4: Answer the (dinner) Belle at the Be Our Guest-themed 10K. You’re invited on an enchanting adventure with Belle, Lumière, and other dinner Guest’s as you explore this 6.2-mile course.  Half Marathon – November 5: Grab a seat at la mesa Madrigal and channel your inner Luisa to tackle Disney’s Encanto-themed half marathon. Use your unique gifts to cross the finish line of this 13.1-mile course.

community collide for a spectacular weekend! For the first time ever, the Foundation will be a participating charity at the Disney Wine & Dine Half Marathon Weekend in Orlando, November 3-5, 2023. Sign up for Team Victory to represent our community, and run to raise funds to help further our mission. You can choose from three races, a 5K, 10K, or half marathon. each race, you’ll from three races, a 5K With

W en ch en

njoy hara nter

y an array of Disney acter sightings and rtainment, a finisher medal, refreshments, a t-shirt, and a downloadable finisher certificate.

*Anya ff ected runners must have physician approval.

Sign up today – spaces are limited. Contact Alyssa Aiello, aaiello@marfan.org, for details.

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Spring 2023