Connect Issues Winter 2022


For many months, eight dedicated people from across the country, and one in Amsterdam, trained to run the 26.2-mile New York City Marathon on November 7 to fundraise and create awareness for Marfan, Loeys-Di- etz, and Vascular Ehlers-Danlos syndromes. Each runner has been af- fected by these conditions through a loved one*, and their inspirational stories were shared on their fundraising pages. Not only did each runner surpass personal fundraising goals, but collectively, they raised $80,000 ($55,000 over the goal!). We want to give a special shout-out to the father/daughter duo, Jim and Tess Prutow, who raised $50,000! The Marfan Foundation would like to extend a huge thank you to the marathon team for their astounding level of commitment. We applaud them for the mental and physical endurance they demonstrated to complete the largest marathon in the world! The Marfan Foundation Marathon Team • Ivana Batstra, Amsterdam • Chris Borman, Groveport, OH • Susan Cooke, Jacksonville, FL, & Christine Kledzik, Dover, DE

• Julia McNeill, Smithtown, NY • John Murray, Shoreview, MN • Lisa Paye, Grove City, OH • James & Tess Prutow, Poway, CA

*Please note, it is recommended that people with Marfan and related conditions should not participate in competitive or contact sports.

“She goes above and beyond in everything, and the least I can do is train for four months and do something to make more awareness for her condition,” said Julia McNeill, whose sister, Caroline, has Marfan syndrome. “It was without a doubt the greatest experience of my life."

p Susan Cooke and Christine Kledzik cross the finish line after completing the marathon on behalf of Christine’s son and Susan’s nephew, Brendan, who has Loeys-Dietz syndrome. Upcoming Special Events

We are so excited about our line-up of special events taking place around the country (and one online) between now and the summer. If you’d like to get involved with an event committee, please contact Deborah Goodman at More information about each event, including how to purchase tickets, is on our website:

▸ (Un)Corked Virtual Wine Tasting January 27 ▸ Heartworks St. Louis March 19 ▸ HeartWorks Chicago April 22 ▸ Evening with Heart Raleigh May 5 ▸ HeartWorks NYC May 24 ▸ HeartWorks Houston June TBD


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