Connective Issues Spring 2023

 Elliot, age 7

 Ryan with his aunt at the family garage sale.

 Colin, age 5


Ryan Johnson and his family wanted to raise money to support The VEDS Movement so they came up with an idea for a multifamily garage sale, spearheaded by his mother, Judy. Ryan’s sister-in-law and nephews, Colin and Elliot, have VEDS, so the family decided to organize the event to raise money and awareness for the condition. The event, held in the fall of last year, was a huge success in every way, including $15,000 for The VEDS Movement. “With a lot of support from family and the community, the idea gained traction,” said Ryan. “The garage sale was a lot of work, but the number of volunteers who stepped up to help was amazing and very humbling. People from all over gave donations and volunteered.” The garage sale initially raised $5,000, and Ryan decided to see if the two large companies he works for would match the donation. He discovered both used the Benevity app for matching. He then validated The Marfan Foundation was an approved nonprofit and confirmed that the donations could be matched twice, one per company. Once he had his donation receipt, he was able to upload it to the app for approval, and less than a month after submission, he received final

approval and another $10,000 for The VEDS Movement. “The matching process was much easier and quicker than I thought it would be,” said Ryan. “Companies are making it easier to accomplish and, on top of that, they are encouraging employee participation and engagement in charity, volunteering, and philanthropy.” Ryan’s sister-in-law, Karen, said the family was so overwhelmed with gratitude for the support from their friends and family who donated their time, energy, belongings, and financial support to make the garage sale such a success. “There is a significant need for more awareness, resources, and research to support our VEDS community, and I'm glad that our e ff orts were able to contribute to The VEDS Movement in these areas,” said Karen. “It was also just such a special moment for our kids to participate and contribute their own energy and belongings to this event and to witness the love and support of this huge team of people fighting for us and doing what they can for all of us who su ff er from VEDS.” To learn more about multiplying your donation to the Foundation, including the Loeys-Dietz and VEDS divisions, visit .


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