Connective Issues Winter 2024

A Legac y of Impact

When Everett Butts passed away in August 2023, just shy of his 100 th birthday after a long and fulfilling life, he left behind a legacy of impact and lasting awareness about Marfan syndrome – including 100 life-saving gifts made since 1995. Everett was a World War II Army veteran who owned a plant nursery in California. He was also an outspoken advocate for Marfan syndrome following the 1995 death of his son, Jonathan. Jonathan passed away suddenly at the age of 30 after an aortic dissection. Everett and his wife became staunch supporters of Marfan education, awareness, and philanthropy. “None of us had ever heard of Marfan syndrome, and it seemed to Everett and Marilyn, my mother’s sister, that most healthcare providers didn’t either,” said Brad Nystrom, Everett’s nephew. “So, they started educating themselves and talking to people.” Everett and Marilyn became very active in raising awareness for the condition by supporting the Foundation, attending educational events at Stanford Medicine related to Marfan syndrome, and spreading the word to physicians. “There were quite a few times when Everett approached strangers who had what he called ‘the Marfan look’ to tell them about Marfan syndrome,” said Brad. “He was always willing to risk an angry rejection in order to save a life.” After Everett’s passing, Brad reached out to the Foundation to disclose Everett had named it as a beneficiary in his trust, leaving a contribution that will continue his legacy of impact. “He did not have a lot of money,” said Brad. “But he was determined to educate others to raise awareness about Marfan syndrome. I think that in this way he made an important contribution to the cause.”

“Everett’s gifts have greatly touched and impacted the Foundation and the communities we serve,” said Helaine Baruch, Chief Philanthropy O ffi cer. “He has contributed to the Foundation since 1995 in memory of his son and has made more than 100 gifts to our organization. We cannot express our gratitude enough for his thoughtfulness, advocacy, and generosity.”

Did you know? The Foundation o ff ers di ff erent ways to leave your legacy to the Foundation while providing financial benefits for you and your family. You can learn more at MarfanLegacy.org. Make plans to join us for a free estate-planning webinar. Guest speakers Alice Leopold, CRPC®, CLTC®, Executive Director-Investments and Financial Advisor, Oppenheimer & Co. Inc., and Amy

J. Guss, Partner and Chair, Private Client Services Duane Morris LLP, will discuss common mistakes to avoid when estate planning and answer your questions on Wednesday, February 7 at 7:30 pm ET .Watch for registration details on our website.

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Winter 2024