Connect Issues Fall 2020

“A WALKING MIRACLE” PLANS A GIFT

At 80 years of age, Valerie Camp is, in the words of her surgeon, “a walking miracle.” Born at a time when little was known about Marfan syndrome, she has overcome all odds and continues to live a full and happy life today in Arizona. While Valerie doesn’t recall today how she

p 2019 LDSF Board Retreat

On July 1, the Loeys-Dietz Syndrome Foundation officially became a division of The Marfan Foundation. The move, in some ways, was a homecoming for LDSF, which shares a significant history with The Marfan Foundation. It was largely due to research on Marfan that Loeys-Dietz syndrome was first recognized. “There is a strong tie between Marfan and Loeys- Dietz, making this expanded relationship a great next step for both organizations as we collectively seek to provide education, awareness, and resources to more people affected by these conditions,” said Beth Utz, who helped to found the Loeys-Dietz Syndrome Foundation and currently serves on The Marfan Foundation Board of Directors. Beth, whose son, Alex, has Loeys-Dietz syndrome, continued: “This is an opportunity to keep the identity of the Loeys-Dietz Syndrome Foundation and strengthen it alongside The Marfan Foundation to maximize reach and impact for all.” As a division of The Marfan Foundation, the LDSF has a division director, Angela Crist, and the support of the entire Marfan staff. The LDSF Board of Directors has transitioned into fulfilling a strategic advisory role and remains actively engaged in directing the vision and activities of the organization. Together, the LDSF and The Marfan Foundation are putting together new LDS-focused education and support opportunities to provide a greater breadth of programs and services for individuals and families living with Loeys-Dietz syndrome. The LDSF began and grew under passionate and generous volunteer leadership for fifteen years. Combined with the force of The Marfan Foundation, there is a wide horizon of new hope and opportunity for our community. LOEYS-DIETZ SYNDROME FOUNDATION UPDATE

first heard of Priscilla Ciccariello, the Foundation’s chair emeritus, or The Marfan Foundation, she does credit Priscilla and the early work of the Foundation with educating her about Marfan syndrome and directing her to the leading Marfan doctors of the day. It was that information, she insists, that was life-saving for her and why she’s still going strong, despite multiple Marfan-related surgeries over the years. When it came time to finalize her estate plan, and with no remaining family, Valerie knew she wanted to leave her legacy to The Marfan Foundation. Her dream is to ensure that affected individuals will continue to have access to the best medical information and professionals available. She wants to do her part to ensure that no one diagnosed today has to search, as she did, for the critical information that can save their life. Valerie’s legacy gift, when received, will do exactly that. “We are delighted the Foundation has had such an impact on Valerie’s life and are so grateful that she has selected the Foundation as the recipient of her legacy gift,” said Michael Weamer, President and CEO of The Marfan Foundation. “It’s my honor to welcome Valerie to the Antoine Marfan Legacy Society and offer my heartfelt thank-you for notifying us of her legacy gift. Recognizing Valerie’s generosity and the lasting impact it will have on future generations, during her lifetime, is truly meaningful to all of us.” If you would like to learn more about the Antoine Legacy Society or how to include The Marfan Foundation in your estate plans, please visit MarfanLegacy.org or contact Megan Martin at mmartin@marfan.org.

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Fall 2020