My personal experience with ALS started years before the ice bucket challenge. It started back in the year 2000, when I was in the 8th grade. During my 8th grade social studies class, I had to write an essay about a high profile disease that was prevalent during the 1940’s. Given the fact that my life revolved around baseball at the time, I thought it was appropriate to write about Lou Gehrig and his debilitating disease known as amyotrophic lateral sclerosis, better known as ALS.
Fast forward 10 years. I was living and working in Queens, New York shortly after graduating from St. John’s University. One blustery winter morning, I decided to go for a run outdoors. After just a few miles, I started losing feeling in my hands, and decided it would be best to head back to my apartment. Upon returning to my apartment, I felt hopeless as I struggled to perform the routine task of opening my front door due to the fact that my hands were numb. During this struggle, I thought to myself, is this what it is like to suffer with ALS?
For those of you who don’t know, ALS is a progressive neurodegenerative disease that affects the brain and spinal cord. Overtime, victims of ALS slowly become disabled. In short, those diagnosed with ALS slowly lose their ability to send impulses to the muscle fibers within their body. As a result, individuals slowly lose their ability to walk, speak, eat, swallow, and breathe.
Shortly after my experience with struggling to open my front door, I was introduced to Ryan Matthews. This was my first experience interacting with someone who lost a loved one to the terrible disease of ALS. Throughout the years, my friendship with Ryan has continued to grow. So has my awareness of ALS and the Susie Foundation. The Susie Foundation (named after Ryan’s late mother) was established in 2013 with the sole purpose to raising funds so future generations will not have to suffer with the horrid disease known as ALS.
As I embark in running 26.2 miles during the 2016 Chicago Marathon, I could not think of a better charity to fundraise for than the Susie Foundation. Many of the larger, well known not-for-profit organizations are incredibly efficient at being inefficient with their fundraising efforts. I know that raising funds for the Susie Foundation will provide a direct impact in contributing to the fight vs ALS. Please consider donating funds to the Susie Foundation as I run the Chicago Marathon on October 9th. More information about the Susie Foundation can be found at www.thesusiefoundation.org.
The Susie Foundation (TSF) was founded in 2013 in memory of my Susan Ready Matthews, who passed away from Amyotrophic Lateral Sclerosis (ALS) in 2011 at age 57. Having experienced the challenges, travails, and pain brought on by an ALS diagnosis first-hand, Susan's only son Ryan decided to launch TSF with a very simple mission: to help others facing similar difficulties.
Since its founding, TSF has raised over $70,000 to support patients and families impacted by ALS. Every penny it has raised has gone directly towards supporting these efforts and specifically to fund its growing Flex Grant Program - which provides direct financial aid to home bound ALS patients struggling to make ends meet - and a Days of Service initiative - which provides hands-on, non-medical assistance to patients, families, and caregivers.
Thanks to the support of the organization's incredible network of volunteers, donors, and friends, TSF is looking forward to continuing its work in helping persons living with ALS and their families live rich, meaningful, and happy lives while combating this debilitating disease.
ALS is a progressive, neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert. ALS effects as many 30,000 Americans and, here in Connecticut, there are over 250 people presently living with the disease.
This year, to help battle this devastating disease, TSF will contribute well over $10,000 directly to local patients and families residing here in the State of Connecticut. Through the launch of the organization;s innovative flex grant program, patients now have the ability to seek reimbursement for costs that are not traditionally covered by private insurance, Medicare, Medicaid, and other assistance programs. By helping patients afford such essential products and services like respite care, adaptive devices, and home modifications, TSF helps patients remain at home by easing a portion of the financial burden levied by an ALS diagnosis.
Additionally, TSF also sponsors a Days of Service program, designed to provide non-medical support services to home bound patients and families by assisting with such efforts as general house/yard work, home remodification, ramp installation, and the like.
100% of all funds raised as a part of the 'Tommy's Trek' initiative will go directly to supporting patients, families, and caregivers living with ALS.