Connect Issues Fall 2020

We are so excited to celebrate one year of The VEDS Movement. It has been nothing short of incredible to see how the community has grown in the last couple of years, and to see how much we have accomplished together in just one year as a division of The Marfan Foundation. Here is a look back at some of the things we have to celebrate. First, in October 2019, we launched several monthly virtual support groups for VEDS. Then in December, we launched our website devoted entirely to information and resources for people affected by VEDS, . Shortly thereafter, we published a letter to the editor in the Advanced Journal of Emergency Medicine , highlighting the importance of recognizing a medical emergency in someone with VEDS in the emergency department. We kicked off the New Year by working on an emergency preparedness kit for patients, which includes a letter to the emergency department, a wallet card, and a fact sheet for EMTs and paramedics. This became available as a free download from our website in August. We also worked with members of our Professional Advisory Board and The Sullivan Group to develop an online Continuing Medical Education Course (CME) targeted for emergency medicine professionals, which went live in August and is available for any medical professional who wishes to take the course. Later in the summer, we had even more excitement. We arranged for two members of our Steering Committee, Frances and Bella Marin, to be featured in the August issue of EP Magazine , a parenting magazine that has more than 100,000 subscribers. Frances shared her story of parenting a child with VEDS and Bella shared what it was like growing up with VEDS and accomplishing her goals despite many medical challenges. Katie Wright, the director of The VEDS Movement, was featured in an episode of the popular podcast, Two Disabled Dudes. Finally, we established the month of October as a VEDS Action Month for awareness and advocacy, giving the community a month to focus on advancing our cause. On October 7, members of our Steering Committee met with the FDA for a Patient Listening Session we set up. Then, on October 12, thanks to the support of Board advisor Gil Bashe and his PR team at Finn Partners, USA Today published an article about Foundation Board Member and Defy Foundation Chairman, Dr. Tony Yasick, and his story with VEDS. We hope you were able to celebrate with us during our first VEDS Birthday Bash on October 23, and we look forward to many years of celebration and positive change for the VEDS community in the future. You can help us make every year a greater success by donating: . As the years go by, we know we will look back at this moment and realize this momentum was just the beginning. CELEBRATING A YEAR OF MOVEMENT



Fall 2020

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