Connect Issues Spring 2021

By Katie Wright, Director, The VEDS Movement

We are excited for what the future brings as we enter our second year as a division of The Marfan Foundation. We had a great start to the year! In January, Thrive Global published a community story about Morgan Jozwiak and her son Cameron, and Morgan’s mission of raising awareness, educating professionals, and raising funds for research. Morgan’s story is truly one of creating hope for the future. In February, we published informational packets for the school nurse and teacher, designed to assist in creating an emergency plan and educating the school about VEDS. These packets are available free on our website, in our Parent Toolkit. Then in March, we hosted a webinar with Dr. Peter Byers about creating a care team for VEDS, and joined the Foundation in launching the new Kids Club, a place for kids with Marfan, VEDS, and LDS ages 9-12 to get together once a month and have fun. Andrea Friedman, MSW, and Ashley Rose Marisch, a member of our VEDS community, host this group.

p Morgan Jozwiak and her son Cameron

On April 9, we then joined the DEFY Foundation in hosting the virtual DEFY VEDS Scientific Meeting, encouraging collaboration and discussion about research in VEDS. More than 100 researchers and medical professionals from all around the world registered for this meeting. This was truly an inspirational turnout. Soon after, we hosted a webinar for the community that featured a research update from this meeting. Finally, we published a fact sheet on VEDS for the emergency department on our home page, and we continue to explore additional ways to increase awareness and improve outcomes in emergency care for people with VEDS. You can continue to prepare for emergencies by using our Emergency Preparedness Kit, which is available on our website as well. We look forward to the Foundation’s virtual Annual Conference, July 8-11, and hope to see many members of our community there. Thank you everyone for your continued support of The VEDS Movement and our mission to charge forward and save lives.

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Spring 2021