About The Susie Foundation
The roots of The Susie Foundation can be traced back to November 7th 2009 – the day Susan Ready Matthews was diagnosed with Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease). While struggling with the disease, Susan and her family took their first foray into fundraising, raising over $11,000 in 2010 in support of Susan’s Walk to Defeat ALS and The ALS Association of Connecticut. The outpouring of love and support during this fundraising effort helped to provide Susan with hope and optimism, furthering her resolve as she struggled with the worst ALS has to offer.
Following Susan’s passing on April 17th 2011, her family decided to continue this legacy of service, launching The Susie Foundation in 2013 with the hope of alleviating some of financial burdens levied on individuals and families following diagnosis. Since that time – and while being wholly volunteer led – The Susie Foundation has raised over $350,000 to support persons living with ALS across southern New England.
The Susie Foundation is working tirelessly to build on this legacy of service to ensure local persons living with ALS, as well as their families and caregivers, can access life-enhancing funding, services, and technologies to ensure they are able to continue to lead rich and meaningful lives.
What is ALS?
Amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease) is a progressive neurodegenerative disease that effects the motor neurons in the brain and spinal cord that control voluntary muscle movement. This progressive degeneration continues until these motor neurons die, severing the brain’s ability to initiate and control muscle movement, including the ability to speak, eat, move, and, ultimately, breath. Roughly 75% of all ALS patients begin to experience muscle weakness in the hands, arms, feet, or legs, which is called limb-onset ALS, and the remaining 25% of people with ALS first show signs of slurred speech, which is called bulbar-onset ALS. No the type, ALS is 100% fatal and there is no known cure. Most people with ALS live about 2-5 years after experiencing their first signs of the disease.
What are some treatments available to those living with ALS?
As there is no known cure (though there are promising emerging treatments, including those focused on stem cell, antioxidant, motor neuron shielding, and immune system-modulating strategies), the “treatment” of ALS boils down to symptom management. ALS requires a multi-disciplinary approach that ensures a persons physical, psychological, and nutritional needs are all being met. This requires a team of therapists (e.g. speech, occupational), caregivers, and palliative specialists, in addition to assistive technology, which can include invasive/non-invasive ventilators, power wheelchairs, and eye tracking technology.
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