My wife, Theresa and I, founded Matt’s Place Foundation shortly after I was diagnosed with ALS in February 2015. ALS is a progressive neurodegenerative disease. It affects motor neurons in the brain and spinal cord, depleting nutrition sent to the muscles throughout the body. The degeneration of these motor neurons eventually leads to loss of muscle control, paralysis, losing the ability to eat, talk, walk or breathe.
There are roughly 20,000 to 30,000 people living with ALS in the ... Leggi tutto
My wife, Theresa and I, founded Matt’s Place Foundation shortly after I was diagnosed with ALS in February 2015. ALS is a progressive neurodegenerative disease. It affects motor neurons in the brain and spinal cord, depleting nutrition sent to the muscles throughout the body. The degeneration of these motor neurons eventually leads to loss of muscle control, paralysis, losing the ability to eat, talk, walk or breathe.
There are roughly 20,000 to 30,000 people living with ALS in the US. Every 90 minutes someone is diagnosed and every 90 minutes someone dies from this disease. Currently, there is only one FDA approved medication that could extend your life up to six months. Scientists do not know what causes this disease and have no leads on a cure. With military veterans being twice as likely to be diagnosed with the disease.
After my diagnosis, Theresa and I were doing research on the disease and services that are offered to help families battling ALS. There are so many needs, but one that seemed to be vitally important is the costs of remodeling homes to be adapted for the disease. This can be extremely expensive.
I am fortunate to be a veteran and eligible for the benefits that the VA provides those with ALS. So our question was, what do families do that do not have those benefits? With medical equipment and care ranging from $250,000-$300,000 a year, how can we help? After further research we found a need in the area of housing and transportation for families living with ALS.
The primary mission of the foundation is to build adaptive and interactive homes that allows the family to stay together and the ALS patient to have as much independence and dignity as possible. This includes automation that allows an ALS patient to control their environment, including lights, fans, thermostat, television, bidet and doors, all with touch, voice and eye gaze technology.
For those that would prefer to stay in their home as they battle this disease, we provide funding for ramp access, as well as remodels of living space and bathrooms.
Through our two signature yearly events, the downtown event in March and our golf tournament in July, as well as through private donations, we have been able to fund six projects in just over our first year.
With an all-volunteer board and great community support we have been given, it has been an incredibly rewarding journey
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