After seeing his primary doctor in September 2019 for constant muscle twitching and high levels of creatine in his blood, Nick was referred to a neurologist for more testing. At his appointment in January 2020 the neurologist gave us the preliminary diagnosis of ALS (Amyotrophic Lateral Sclerosis). Unfortunately, there is no positive/negative test for ALS, so we were referred to a specialist at UT Southwestern for even further testing.
In February, the second neurologist ruled out all other diseases and confirmed the original ALS diagnosis. At that point, we knew our lives would never be the same. For those of you who've never heard of ALS, it's a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow, and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis. ALS can strike anyone, and presently there is NO known cause or CURE.
In the months that followed, Nick began to have trouble speaking and his words became slurred and unintelligible. Because of the way the disease progressed, Nick’s diagnosis was further refined to bulbar onset ALS. By the fall of 2020, he was unable to speak at all and was only able to communicate through hand signals and a small writing tablet. We lost Nick in October 2021, less than two years after being diagnosed with ALS, at the age of 48.
2023 will be our 3rd year to participate in the Walk to Defeat ALS(R) and we are really excited to have the opportunity to raise funds to support those like Nick who are affected by ALS and to spread awareness of the urgency to find treatments and a cure. Please consider a donation to help me reach my Walk to Defeat ALS(R) fundraising goal!
Let me reiterate how important this is and the urgency -- there is NO CURE. Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. That’s why I’m walking. To change the statistics. To bring help and hope to those living with the disease. To ensure that no one ever hears the words: 'You Have ALS' again. It was shocking to us to hear those words, given that Nick is so young. ALS can affect those that are young, old, people of any race, gender, nationality, etc. IT DOES NOT DISCRIMINATE!
The past two years have brought incredible advancements in ALS research, expanded access to care for people living with ALS, and enabled legislation that impacts the quality of life of people with ALS and their families. But we can’t stop now -- the key to a cure begins with you!
Please consider walking with me or sponsoring me for Team Nick. With your help, we will be able to make a difference in the lives of people affected by this disease.
WHY WE NEED YOUR HELP
To bring hope. To raise awareness. To provide resources and services to families free of charge. To help unlock the mystery of ALS and find the key to treatments a cure. Will you join us?
ABOUT ALS
ALS can strike anyone. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to provide help and hope today!