Hi and thank you for coming to my Crowdrise fundraising page.
I am married to Vivian Fisher. We will be celebrating our 34th wedding anniversary August 27th, 2017. We have 5 children, 4 grandchildren and one that is due in February 2018. I am currently an Operating Engineeer for a healthcare facility. Over the course of my career, I have been Facilities Manager and Director of Engineering primarily for hospitals and universities. I enjoy playing ball and of course running.
I have recently started running as a means to stay fit and healthy when I turned 65 last September. When I started running last year, I joined the NYC Road Runners Club. I have been running with the club and just on my own. I came to enjoy the workouts. In the course of my races, I qualified for and am now guaranteed entry to this year's NYC Marathon on Sunday, November 5th 2017. I am both excited and anxious since I will be running a 26.2 mile race for the first time at age 66.
Since I am running the marathon, I realized that this would be great way to raise funds for a special cause. I have chosen NORD (National Organization for Rare Disorders). NORD's mission is to help fund research and provide treatment and hopefully cures for the many rare disorders and diseases that exist. There are many most of which are obscure and afflict many people including the families of those afflicted to simply cope. We have two family members afflicted with rare disorders:
Our niece - Arielle Fisher who is no longer with us; daughter to my brother Brian and sister in-law Theresa was afflicted with Werdnig - Hoffman disease. Werdnig-Hoffmann disease, is a form of spinalmuscular atrophy type 1 (SMA1) or acute spinalmuscular atrophy. Arielle was afflicted with Werdnig Hoffman at birth. We lost Arielle before she reached her first birthday.
Aeon - Narinya Aeon Viloria (our niece) is the eldest of two daughters to Angel and Narinya Viloria. Angel's father Salvatore ( who is no longer with us) and my wife Vivian were brother and sister. Aeon was born with encephalocele which is an opening in the skull resulting in partial brain protrusion. This was treated over time with surgery. Aeon then began experiencing an increasing frequency of severe vomiting. This resulted in a diagnosis of the rare disorder; Cyclic Vomiting Syndrome. Aeon is doing better but is nonetheless still suffering from this disorder.
I am therefore compelled to dedicate my run to Arielle and Aeon. i also hope that all who suffer with rare disorders including family and friends of those afflicted will be comforted knowing that there are people working to raise funds to allow the research to continue to diagnose, treat, comfort family and find cures for rare disorders.
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