Connective Issues Spring 2024

Foundation Helps Netherlands Woman find Global Community

As the Foundation expands its programs internationally, the importance of sharing resources and connecting community becomes more evident. Such is the case with 20-year-old Yvonne from the Netherlands, who has Loeys-Dietz syndrome. She used the internet to learn new information about her condition and meet others like her. Now, she is bringing people together in her own community. “I quickly figured out The Marfan Foundation in America is huge!” said Yvonne. “I made connections with people my age. I also was able to attend some of the educational webinars o ff ered by the Foundation. I’ve been able to learn so much.” Yvonne recognized the need for community among young adults with similar conditions in her country, so she organized an annual gathering. She has also been involved with the Marfan Europe Network and attended an international patient meeting in Belgium in the last year. “It was amazing being in Antwerp with people from all over the world who have Loeys-Dietz,” she said. “I was able to talk to so many amazing people and learn a lot of new things about LDS, especially from the doctors who answered our questions. The best part was getting a picture with Dr. Bart Loeys and Dr. Hal Dietz.” Yvonne is looking forward to more international meetings to share information and raise awareness. She also hopes more people will see the therapeutic benefits of connection both in person and online. “We are all going through our own journey, but you don’t have to do it alone,” she said. “Sometimes just talking to someone who understands can make a big di ff erence.”

 Yvonne and her mother, Inka, with Dr. Bart Loeys (left) and Dr. Hal Dietz (right)

Launches New International Support Group LDS Connect International is a new virtual support group for people living with Loeys-Dietz syndrome, as well as parents and caregivers. “LDS Connect International provides a space where individuals a ff ected by Loeys-Dietz can find understanding, comfort, and guidance regardless of location or healthcare environment,” said Stacey Watson, director for the Loeys-Dietz Syndrome Foundation. “We hope that by bringing our international community together in a casual environment, they can build connections and share knowledge to improve their quality of life.” This group is intended for community members living outside of the United States and is conducted in English. The group meets on the 4th Monday of each month at 2 pm EST. There is no obligation so please try it out! Sign up today at bit.ly/LDSconnectinternational .

Three years ago, the Foundation hosted its first summit for people who speak Spanish and live with genetic aortic and vascular conditions. Our commitment to serving our Spanish-speaking community members has continued to deepen connections, enhance education, and provide support. In February, the Foundation o ff ered its first Spanish-language virtual support group called Conexiones. The group is lead by sta ff member, Kathleen Bolton, who is bilingual. “Conexiones fosters a supportive environment where participants can exchange information, coping strategies, and emotional support in their native language,” said Kathleen, coordinator for the support group and Help Center Manager. “There is no cost and no obligation so everyone should register for one to try it out.” Conexiones meets monthly via Zoom on the third Wednesday. Sign up today at Marfan.org/calendar/conexiones. New Support Group Expands O ff erings for Spanish-Speaking COMMUNITY

 Kathleen (3 rd from left) at the 2024 Houston Walk for Victory with Stacey Watson, director of the Loeys-Dietz Syndrome Foundation, Helaine Baruch, chief philanthropy officer, and Ryan Rodarmer, director of The VEDS Movement ¡Únase a nosotros para nuestro nuevo grupo de apoyo impartido en español - Conexiones! El grupo se reúne cada tercer miércoles del mes a través de Zoom. Regístrese hoy Marfan.org/calendar/conexiones.

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Spring 2024