About DeCo
Hi, my name is Mike, many of you know me as DeCo (pronounced “Deeko”). I have Vascular EDS, we call it VEDS (the EDS stands for Ehlers-Danlos Syndrome). It’s a rare and serious genetic connective tissue disorder. I did not find out that I had this condition until about 5 years ago, when I was 37 years old. My Dad died of an aortic dissection when I was 7 years old, so this news at 37 ended up explaining a 30 year mystery.
The Crisis
In January of 2021, completely out of the blue, I suffered an acute 3.5 inch dissection of my right iliac artery leading down to my femoral artery...within minutes my leg and foot started to go numb. I was rushed to the hospital and ended up having a 5-hour limb-saving and life-saving surgery. Crisis = Opportunity. I want to use this experience for great. I want to raise awareness and funds for the Vascular EDS community. People need to know about this condition and we need more money for continued research.
The Opportunity
The "Walk with DeCo" Mission in 2021 was simple:
Walk 4,000,000 steps and raise $40,000 for Vascular EDS. Over the years we have kept that spirit and momentum going by fundraising for some very impactful research initiatives to benefit people with genetic vascular diseases, including Vascular EDS, or VEDS.
- A Humanized Mouse Model research project led by Dr. W. Robert Taylor at The Wallace H. Coulter Department of Biomedical Engineering at Georgia Tech and Emory University.
- An innovative project to create CLARITY (Collaborative for Longitudinal Aortic Research In The Young), led by renowned pediatric cardiologist Dr. Shaine Morris, MD, MPH, at Texas Children's Hospital.
Other Organizations Doing Amazing Things!
