Connective Issues - Winter 2020
Since the announcement of our new VEDS division in October, we have been busy developing programs and services for those diagnosed with VEDS (Vascular Ehlers- Danlos Syndrome) and their family members. NEW WEBSITE The division, now called The VEDS Movement, launched its new website – thevedsmovement.org – full of information and resources for those affected by VEDS, as well as physicians, on December 2. The website also provides ways for those affected to connect with others on the same medical journey, through support groups, annual conference, regional symposiums, and The Marfan Foundation Walk for Victory program. VIRTUAL SUPPORT GROUPS The Movement also launched four new support groups for the community: Coping with Loss, VEDS Parents, VEDS Connect, and Awaiting Diagnosis. These groups are intend- ed to provide both educational and emotional support for VEDS NEWS
p Left: Team VEDS at the Orlando Walk for Victory. Right: Joy Foote and Melissa East at the Orlando Walk for Victory.
those in the community, as well as provide an additional avenue for connecting with others living with VEDS. Katie Wright, director of the Movement, hosts VEDS Connect, and co-hosts Awaiting Diagnosis with our chief scientific officer, Josephine Grima. The VEDS Parents group is co-hosted by Jan Lynch, who is our on-staff nurse and director of the Help & Resource Center, and Abby DeLong, a well-known parent in the VEDS community who spends a lot of her free time helping individuals in the community. Our Coping with Loss group is hosted by Susan Leshen, staff licensed clinical social worker. TEAM VEDS Team VEDS has joined the Walk for Victory action! Team VEDS will be at each Walk to help create community and connect people with their “genetic cousins,” the Marfan and related conditions community. Head to Marfan.org/ Walk for all the upcoming Walk cities and dates. Melissa East, who lost her brother, Dave, to VEDS, participated in Team VEDS in Orlando. “Finding community changes everything. The symbolism of walking together, because no one has to walk this journey alone, is so powerful. That is the real victory,” said Melissa East, who was part of Team VEDS at the Orlando Walk for Victory in December. “We are so thankful to the Marfan community for embracing those with VEDS and welcoming them into their community with open arms. Together we walk, together we save lives.” Visit TheVEDSMovement.org for up-to-date information about VEDS, get help finding a doctor, and learn about participating in our events across the country throughout the year.
p L-R: Cathy Bowen, Fran Marin, Ramon Soria, and Rosaura Velazquez at 2019 Annual Conference.
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