Special Event - Walk for Vascular Ehlers-Danlos Awareness - May 25 (Rain Date June 1)

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• • MAYO CLINIC 1-3 117-11 Join Austin in Supporting Ehlers Danlos Syndrome Research at Mayo Clinic This is my grandson, Carlos, he is five years old and has Vascular Ehlers- Danlos. Carlos was diagnosed with Ehlers-Danlos two weeks before his father, my Son Justin, died on March 30. 2015. Justin died at the age of 21 from this rare and hereditary disease He was proceeded In death by �my late pregnant fa who tlied at the sae o132 on Mav 31 3 Pamela also Zed d� ue to - complications from Vascular Ehiers-Danlos. Pamela also lost her father, her grandfather, all of her uncles, and three cousins to this mysterious disease. Ehlers-Danlos remains largely unknown to the public, its invisibility adversely effects the funding and research put into solving this deadly killer. Carlos is destined to lost the few cousins he has to this rare yet deadly disease. I implore you to put a face to this rare disease and in doing so you would draw the attention Ehlers-Danlos so desperately needs. Due to Ehlers-Danlos Carlos will never have the pleasure of knowing, playing, talking or spending tiem with his father or grandmother_ Due to Vascular Ehlers- Danlos Carlos will not be able to play sports, can't lift anything heavy, and has to be careful wilh any physicial activity he does. Carlos is a happy, vibrant. smart 5 year old and I desire that he may obtain a full and enjoyable life. So I am wirting this letter to raise awareness about this rare disease, with greater intellectual and financial investment poured into Ehlers-Danlos research a cure can be found. Ehlers-Danlos effects somewhere between 1 in 2500 to 1 in 5000 people in the United States. Medical understanding about this disorder seems to be limited among society and even medical professions. There are six different type forms of Ehlars-Danlos. The most fatal is the vascular where patients suffer from life threatening arterial dissections and ruptures. The lifepan for an individual with Vascular Ehlers-Danlos is uncertain but many die by age 30. This is why I am trying to spread awareness about this disorder. I believe my late wife Pamela and my late son Justin would be proud of my efforts. I knwo my grandson is proud of my efforts I am making to draw awareness to his medical plight. I am fighting for my grandson's life and my late wife's bloodline. I started a walk to develop greater awareness about Ehlers-Danlos. Please help save my grandson. WIJ 3,0-5