Connective Issues Fall 2022

Second Spanish Summit Announced

The Marfan Foundation is pleased to announce that its Second Spanish Summit for Spanish-speaking people with Marfan, Loeys-Dietz, and VEDS is scheduled for Saturday, January 21, 2023. The Summit, a half-day virtual program, will again be chaired by Dr. Juan Bowen, Director of the Marfan and Thoracic Aorta Clinic at Mayo Clinic, who is a member of our Professional Advisory Board and Board of Directors, and Bert Medina, President and CEO of WPLG-TV Miami, who is also a member of our Board of Directors. Joining the planning committee this year are Dr. Arturo Evangelista, Vall D´Hebron Research Institute, Barcelona, Spain, and Dr. Laura Muiño Mosquera, Ghent University Hospital, Belgium. Betcy Matarrita, of Costa Rica, a volunteer leader in our community, serves as Community Chair for the second consecutive year. Last year, the Foundation held its first Spanish Summit and attracted nearly 400 people from all over the world. The presentations were recorded and are featured on our YouTube Channel. Since then, the Foundation distributed its first Spanish

electronic newsletter. Plans are in place to launch a Facebook page and Instagram page in Spanish before the end of 2022. Registration for the Second Spanish Summit will be available later this year. For more information, please contact Eileen Masciale, Chief Program Officer, emasciale@marfan.org. p Betcy Matarrita, Community Chair of the Spanish Summit, with friends she met at conference, David (left) and Ramiro (right).

"Hosting these types of events in Spanish is important not only because of the international outreach and the exposure the Foundation gets but also because of all the participants’ access to medical information. There is nothing like having vital information about your medical condition in one’s native language!" – Betcy Matarrita SEATTLE, ATLANTA TO HOST REGIONAL SYMPOSIUMS THIS FALL

The Foundation is looking forward to continuing its Regional Symposiums on Marfan, Loeys-Dietz, and VEDS this fall with full-day educational events scheduled for Seattle on October 8 and Atlanta on October 15. The Seattle Regional Symposium is hosted by Seattle Children’s Hospital at the Sand Point Learning Center. We are fortunate to have three members of our Professional Advisory Board as event chairs - Dr. Luciana Young, Dr. Sherene Shalhub, and Dr. Peter Byers. The agenda will feature leading experts from the Pacific Northwest, including Dr. Lynn Sakai from Oregon Health Science University, a member of our Professional Advisory Board who first identified fibrillin and, with other scientists, linked it to Marfan syndrome. The Atlanta Regional Symposium is hosted by Children’s Healthcare of Atlanta (CHOA) with Dr. Glen Iannucci serving as event chair. In addition to Dr. Iannucci, featured speakers will include other leading experts from CHOA as well as from Emory University and Piedmont Hospital.

Seattle • October 8 Atlanta • October 15

Registration for the Regional Symposiums is available at Marfan.org/resources/educational-opportunities. The cost is $25 per person and includes breakfast and a Creating Connections lunch, a great time to connect with other attendees and the speakers. Please note that COVID vaccine documentation is required for the Seattle event. Plans are also underway for Regional Symposiums in New York City on April 15, 2023, and Ann Arbor, MI, on May 6, 2023. Registration will be coming soon. If you have any questions please contact Eileen Masciale, Chief Program Officer, emasciale@marfan.org.

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