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Kansas City Network Group
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Back to Chapter and Network Home Page Meet our Network Group Leader  Vicky Asbury I was diagnosed with Marfan syndrome 20 years ago when my aorta dissected and I went to the ER. I was fortunate to have been diagnosed immediately and six hours later I had a new ascending aorta and valve. Since then I have also had my descending and abdominal aorta replaced. I continued to work for the Army as a systems engineer after both these surgeries, but finally retired in 1993. I keep busy doing volunteer work, and watching over my two year old grand daughter for two days per week.
Contact Information Contact:
Vicki Asbury Phone:
(816) 741-8159 E-mail:
jdspicher@aol.com Description of the Group The Kansas City Network Group is a local meeting of the National Marfan Foundation that serves its members in the area by providing connections with peers, up to date information on the Marfan syndrome, support for those affected with the syndrome and their family members, as well as ways to reach out and improve awareness in the community.
Our recently formed group began in June of 2006. Our first meeting was a social. Our projects include compiling a list of Marfan aware doctors in the area, and staffing a table for one week at Starlight Theatre during the performance of Rent, to educate the public about the dangers of Marfan syndrome. We raised some of the money for an ad placed in the Rent program about Jonathan Larson and Marfan. Our group members also have spoken to first year genetics students at the University of Kansas Medical School, and at the University of Missouri Medical School, at the requests of the professors there. We are also here to just listen and talk to people who may have been recently diagnosed and would like to speak to someone else who has Marfan syndrome. Our group has several teens with Marfan syndrome, and we would like to develop some activities for them. Dates of Future Meetings and Events Coming Soon! Recent Events Current Information Coming Soon!
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