Connective Issues Winter 2019

reSeArCH & progreSS

VOICES IN OUR COmmUNITY

“From the beginning, The marfan Foundation has supported life-saving research, and it has undertaken awareness initiatives to get the word out to parents, medical professionals and school personnel. My son Andy, now 41, has benefitted greatly from the Foun- dation’s support of life-saving research and its many awareness initiatives.

Andy was fortunate to have been diagnosed at age 4 because of an alert eye doctor. The marfan team at Stanford gave us hope when we were first coping with the diagnosis. Articles in Connective Issues , like those on sleep apnea and dissection, kept us informed and better able to make wise choices. Andy received cutting edge drug treatments that slowed the growth of his aorta to delay his first heart surgery until he was 21. He was blessed to have brilliant surgeons at Stanford and at the University of Washington. Because of these successful interventions, Andy is now enjoying a full life with meaningful employment, a lovely wife (Leann), and two lively children (Ben and Lily). The Foundation provided the bond that has connected us to the broader community of patients, families, researchers and practitioners. The Wagele Family is deeply grateful for the information, the support and the care we have received for 37 years!” – Joan wagele, issequah, wA “I was diagnosed with marfan syndrome when I was 15. Neither of my parents have it, so it came as quite a shock. As a basketball player and someone whose dream was to serve their country, this was devastating news. Andy And LeAnn wAgeLe, wiTH ben And LiLy

The diagnosis completely changed the course of my life. I now work in healthcare administration because I knew I wanted to make a difference in the lives of patients and families going through difficult times like I once did. The road has not been easy with visits to various specialists, aortic root replacement, lens removal, and a retinal detachment. However, I find so much hope in the progress that has been made in diagnosing, treating, and managing Marfan syndrome and related conditions. my support of the Foundation enables me to play a small part in helping to provide hope to people living with these conditions and families with loved ones who are living with them.” – Kiefer Jundt, Madison, wi pictured (left) with his brother, Mike Hawkins

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