What are the biggest obstacles in your daily life? Is it the disease itself or is it more of everything that goes along with it... (i.e. Financial Issues, Family, Healthcare etc.)
The reason I ask this is that I am the founding Vice President and Director of Operations for a start up non-profit organization dedicated to Neurological Disorders, primarily focusing on seizure activity from uncommon diseases. We feel that if we can help researchers and doctors find the origin and cause of most seizure activity that we can help cure some of these diseases affecting millions of people globally.
We are in the very beginning stages of getting this non-profit organization together. I live in Cleveland, Ohio which is basically the Healthcare Capitol of the world, with Cleveland Clinic, University Hospitals, and CASE Western Reserve University, along with our new Medical Mart (aka Global Center for Health Innovation). If we can make this nonprofit successful we hope to contribute money and resources not only to researchers and healthcare professionals, but to the families and loved ones that deal with these diseases on an everyday basis.
Rob Turek ( www.robbieflair.com ) is the President and Founder of The Dakota Turek Foundation. His son was diagnosed with LKS, a disease which sounds quite similar to yours that affects seizure activity within the brain, and when sleeping his seizure activity is at its worst.
We have an awesome group of people working together to make this organization a success. We would really like to start figuring out how best to help those in need and where to contribute our resources to help find a cure and take care of those affected by the disease in the most productive way possible. We have a number of sports players and celebrity contacts that will be involved with this organization to help get it up and running.
I'm not trying to steal your IamA Thunder, but I really would like to hear from you on how to best support those affected by neurological diseases. I am bookmarking this page as a reference. Thank you!!!
sdonaldsonjr4 karma
What are the biggest obstacles in your daily life? Is it the disease itself or is it more of everything that goes along with it... (i.e. Financial Issues, Family, Healthcare etc.)
The reason I ask this is that I am the founding Vice President and Director of Operations for a start up non-profit organization dedicated to Neurological Disorders, primarily focusing on seizure activity from uncommon diseases. We feel that if we can help researchers and doctors find the origin and cause of most seizure activity that we can help cure some of these diseases affecting millions of people globally.
We are in the very beginning stages of getting this non-profit organization together. I live in Cleveland, Ohio which is basically the Healthcare Capitol of the world, with Cleveland Clinic, University Hospitals, and CASE Western Reserve University, along with our new Medical Mart (aka Global Center for Health Innovation). If we can make this nonprofit successful we hope to contribute money and resources not only to researchers and healthcare professionals, but to the families and loved ones that deal with these diseases on an everyday basis.
Rob Turek ( www.robbieflair.com ) is the President and Founder of The Dakota Turek Foundation. His son was diagnosed with LKS, a disease which sounds quite similar to yours that affects seizure activity within the brain, and when sleeping his seizure activity is at its worst.
We have an awesome group of people working together to make this organization a success. We would really like to start figuring out how best to help those in need and where to contribute our resources to help find a cure and take care of those affected by the disease in the most productive way possible. We have a number of sports players and celebrity contacts that will be involved with this organization to help get it up and running.
Local News Story: http://www.19actionnews.com/story/26480555/bartender-dad-hosts-fundraiser-for-son-with-rare-brani-disorder
Pictures from our Foundation Fundraiser "Dakota's Challenge": http://www.clevescene.com/cleveland/photos-from-cocktail-week-cleveland-dakotas-challenge-fundraiser-at-barley-house/Slideshow?oid=4376661
I'm not trying to steal your IamA Thunder, but I really would like to hear from you on how to best support those affected by neurological diseases. I am bookmarking this page as a reference. Thank you!!!
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