Biofeedback for Huntingtons Disease
Donation protected
Hi, my name is Michael Porter. I want to talk to you for a moment about Huntington’s Disease, or HD. HD is a degenerative neurological disease that produces devastating muscular, emotional, cognitive and psychological symptoms. For HD there are very few treatments for the symptoms, and currently no treatments that will reverse, stop or even slow down the neurological degeneration. To make matters worst, HD is also hereditary – meaning that every child with a Huntington’s parent runs a 50% chance of inheriting the condition. The one tiny bit of good news is that HD is a rare condition as there is only about 30,000 diagnosed cases in the entire US.
Unfortunately, my wife is one of the 30,000 so someday she will die from HD and our 2 children are at risk for the disease.
By profession, I am an engineer and software developer so instinctively I try to find some way to make bad conditions even a little bit better. One thing that effects nearly all HD patients is the so-called “chorea” or uncontrolled body movements. The lack of bodily control occurs as the patient’s brain slowly dies bit by bit. The chorea can manifest is self as uncontrolled shrugging of the shoulders, or twitching of hands, feet and face. It also commonly effects that patient’s ability to walk or maintain balance.
It occurred to me some time ago that it might be possible to use a technique called biofeedback to, in essence, train unaffected parts of the brain to control some of the patient’s muscles and at least temporarily help reduce the chorea and make the patient’s life somewhat better.
This is where you, the potential backers, come in. I need money to build a prototype that I can use to prove out the concept. Thanks to the proliferation of cell-phone technology, the cost of small, powerful, battery-powered computers and the needed sensors has dropped significantly over the past few years. Consequently, as you can see from the sum I am requesting, this will not be an expensive test – but it’s more than I can afford on my own.
The money will be spent on hardware for one proof-of-concept system consisting of a battery-powered WIFI-connected computer and sensor combination that the patient will wear, and an inexpensive laptop PC that will serve as the WIFI base station and will run the biofeedback software.
Unfortunately, my wife is one of the 30,000 so someday she will die from HD and our 2 children are at risk for the disease.
By profession, I am an engineer and software developer so instinctively I try to find some way to make bad conditions even a little bit better. One thing that effects nearly all HD patients is the so-called “chorea” or uncontrolled body movements. The lack of bodily control occurs as the patient’s brain slowly dies bit by bit. The chorea can manifest is self as uncontrolled shrugging of the shoulders, or twitching of hands, feet and face. It also commonly effects that patient’s ability to walk or maintain balance.
It occurred to me some time ago that it might be possible to use a technique called biofeedback to, in essence, train unaffected parts of the brain to control some of the patient’s muscles and at least temporarily help reduce the chorea and make the patient’s life somewhat better.
This is where you, the potential backers, come in. I need money to build a prototype that I can use to prove out the concept. Thanks to the proliferation of cell-phone technology, the cost of small, powerful, battery-powered computers and the needed sensors has dropped significantly over the past few years. Consequently, as you can see from the sum I am requesting, this will not be an expensive test – but it’s more than I can afford on my own.
The money will be spent on hardware for one proof-of-concept system consisting of a battery-powered WIFI-connected computer and sensor combination that the patient will wear, and an inexpensive laptop PC that will serve as the WIFI base station and will run the biofeedback software.
Organizer
Michael Porter
Organizer
Pearland, TX
