Written By: Joseph Dragon
Dragon Law Group, PLLC sponsored a hole at the “Drive to Defeat ALS Golf Classic” at the Legacy Golf Club in Henderson, NV, on Monday, May 10th. The event was hosted by the ALS Association, Nevada Chapter.
ALS is a devastating disease. Although the causes are unknown, it is a terminal disease that slowly paralyzes a patient. Many first heard of ALS in 2014 when the “Ice Bucket Challenge” social fundraising event brought awareness to the public.
In 2019, my mom was diagnosed with ALS. Being that an ALS diagnosis seemed to be rare, the news shocked my family. We all went to Stanford for her first appointment, but the doctors explained that only one drug was approved by the FDA to treat ALS. However, that drug only extends life expectancy by two or three months.
Since that time, I have witnessed the effects of ALS by caring for my mom. My wife, Lindsay Dragon, and I also became involved with the ALS Association. My mom's diagnosis is the first time in my life that I experienced the effects of a terminal disease.
We all see commercials for fundraising events for “Stand up to Cancer” and the “Breast Cancer Research Foundation.” I didn't realize, until two years ago, the tremendous impact these events and foundations have.
Case and point. Today, two years later, the FDA is on the fast track process of approving a drug that significantly reduces the progression of ALS symptoms. In 2019, neither Stanford nor any other advanced medical research universities had any clinical trials going on. Today, Stanford has at least four clinical trials in process and many more trials throughout the country. All these trials are producing encouraging results to slow the progression of the disease. Even more, some clinical trials are studying advanced cellular therapy treatments that could reverse damage caused by ALS. Meaning someone who is already paralyzed may be able to speak and walk again.
These advancements did not occur in a vacuum. In my opinion, they started back in 2014 with the “Ice Bucket Challenge.” The progress is exciting. I believe that in early as 10 years, an ALS diagnosis will no longer be a death sentence. However, this is only possible if our communities keep their foot on the gas by supporting research.
ALS is not exclusive to older people. It can hit anyone at any age. There are young families throughout Nevada who struggle with this disease and struggle to make ends meet. Caring for a loved one with ALS is a full-time job.
The golf event was a great way to learn about ALS and have fun doing it and attendees were able to learn about other ways to help besides donating money for research. Families need meals, care support, legal and professional assistance, handicap construction assistance for their homes, sometimes just someone to talk to, and so on.
No one should have to suffer from ALS. It is no longer a question of if but when ALS will be eradicated. I encourage Nevada communities to step up and be the leaders of this country, pushing the cure to the goal post.
Thank you so much.