Connective Issues Fall 2022

THE DAMMANN FAMILY Dan, Denise, Katie (16), & Hannah (13) The Dammann family has an unidentified connective tissue disorder that is very similar to Loeys-Dietz and signed up for the health fair to get more answers and direction on the many different medical problems they experience. They previously attended the conference health fair in 2015 and 2018, but feel it is important to get up-to-date information every few years. This year, they met with several medical professionals, including a geneticist, a cardiologist, and a foot and ankle specialist. “We were able to get some helpful information to modify activity restrictions for heart problems and change our plan on a foot/ankle issue,” said Denise. “Also, we were able to discuss a plan for future genetic testing that may be available for us.” In addition to the screenings, the family was excited to be a part of conference to learn more from the sessions and make connections with the community. "WOW and WOW! Thank you so much to the whole Foundation for all they did to make this a wonderful experience. A special shout-out to the Hoag Hospital team. Dr Liang, Meg, and Rita were so helpful multiple times. The doctors at the health fair were incredible. Thank you to all!"

p Dr. Mary Roman, Professor of Medicine in the Division of Cardiology of the Department of Medicine at Weill Cornell Medical College, Attending Physician at New York Presbyterian-Weill Cornell Medical Center, and Foundation Professional Advisory Board member, examines Katie during the health fair.

"These conferences are THE REASON I and so many others are still here. Without the

Foundation, my family and I would still be undiagnosed and searching for answers. It’s the healthcare assessments, work of the doctors, volunteers, and Foundation as a whole that changes lives. Thank you for everything you do!"

“Our daughter, Katie, is part of the Foundation’s Teen Council and she was looking forward to meeting her fellow council members in person,” said Denise. “Both of our daughters are involved with the online teen events and were excited to meet the teens they have met online over the years and to make new Marfriends.”

"Dr. Carrol made the conference worth it! We needed help with my daughter’s pain management, and he put all the pieces of the puzzle together for us. We are so excited to go back home and share this with our doctors."

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Fall 2022