Outreach and Global Impact

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How a Hoag-Sponsored Conference Provided a Man and His Family with a Life-changing Diagnosis and Lifesaving Information

Reg Bronson traveled from the central California city of Winton to Newport Beach for The Marfan Foundation’s annual international conference hosted by Hoag. His family tree and history were laden with medical conditions and emergencies, many of which were heart related. After a family member died of an aortic dissection in May 2022, he heard about Marfan syndrome and decided to explore more. Just a couple of months later, he and his wife Edith were at The Marfan Foundation’s conference in Newport Beach. As they were about to leave for the day, a person in a booth offered him a free genetic test. Reg said: “Sure, why not?” and within minutes, he’d done mouth swabs and was on his way. “Three weeks later, I get this call from Chelsey Weatherill, and she said I tested positive for Marfan syndrome.”

Chelsey is a Hoag genetic counselor who plays a vital role in education and recommendations around genetic testing. At that point, Reg wasn’t surprised by the diagnosis. He’d examined what he knew of his grandfather and father’s presumed heart attacks, his family’s history of retinal detachments, lens dislocations, and aortic dissections. Chelsey helped with outreach to Reg’s family members to facilitate their own testing. “In the next 90 days, we had about 45 family members tested and a little under 50% are positive,” said Reg. He has followed up with Dr. David Liang to monitor his Marfan syndrome. Dr. Liang leads Hoag’s Clinic for Marfan Syndrome and Related Conditions in the Elaine & Robert Matranga Aortic Center and is on The Marfan Foundation’s Professional Advisory Board. “For me, at this point, it’s monitoring but being aware of what to watch for,” said Reg. “It’s enlightening to me to have this information. I’m very grateful to Hoag for putting on that conference.”

Hoag’s team provided genetic testing to six people at the conference. Like it did for him, the test provided answers for those individuals who tested positive for Marfan syndrome, and subsequently their relatives, who are now using that information to seek appropriate health care and plan for their families. For those who tested negative for Marfan syndrome and related conditions, they received relief and closure. Hoag’s Clinic for Marfan Syndrome and Related Conditions has had twice the number of genetics consults since the July 2022 conference than it did in the first half of that year, leading to 30 new patients who have established care at Hoag.

Reg, who also has multiple sclerosis, continues to explore Marfan syndrome with his family members and piece together a more complete picture of his family’s health history, especially those that included emergencies and sudden deaths.

“If we can avoid it, we now have the wisdom to do that.”