What is ALS? ALS, or Amyotrophic Lateral Sclerosis, is a disease that causes the mind and body to degenerate to the point where basic life functions become significant daily tasks. People with ALS struggle to eat, walk and breathe, and often suffer from a loss of all basic motor functions. Typically, patients diagnosed with ALS will pass from respiratory failure and have a life expectancy (after onset) of 2-5 years.
Keith Sr. struggled with health issues, including dizziness and light-headedness, as early as September 2022. After multiple visits to his general physician and several incidents of falling, he was diagnosed initially with vertigo in late 2022. He accepted this early diagnosis until May 2023, when he checked himself into an ER in Sacramento. At this time, the neurologist had speculated that he had suffered from the effects of multiple strokes. In late May 2023, as Keith was continuing to deteriorate, he was checked into another ER in Burlingame where the neurologists suspected ALS. Many tests, including MRI scans and electromyography tests, or the diagnostic recording technique that detects electrical activity of muscle and fibers, proved inconclusive. In mid-June 2023, an ALS specialist suggested a preliminary diagnosis of ALS with a rare variant, Mills Syndrome. Three days later, on June 22, 2023, Keith passed away and no formal diagnosis has been completed.
Support for ALS - The Lee boys and their families hope to achieve the following with ALS or Amyotrophic Lateral Sclerosis:
1. Find a Cure – ALS has a life expectancy of 2-5 years from onset. Current medications do little to prolong patients’ life spans. No family should have to go through the devastating process of finding out their loved one has ALS, knowing there is no cure, and that the disease is terminal. The medications available right now prolong life for a short period of time, but hope for any improvement in the patient’s condition is extremely limited.
2. Easy Diagnosis – ALS typically takes one year to diagnose. This is due to limited resources dedicated to the illness, resulting in a lack of testing available, limited information, a shortage of neurologists, and a shortage of ALS specialists. In fact, Keith did not even live long enough to get formally diagnosed with ALS. Going through end-of-life care, watching our father rapidly deteriorate in front of our eyes, and only having limited information and certainty was extremely difficult for our family, as we had no way to treat him and no way to focus on getting better care.
3. Build Awareness – Our family had a basic understanding of and exposure to ALS before Dad’s battle. Immediately, we went in search of as much information as possible to learn more about this neurodegenerative disease. We believe our fundraiser will bring awareness to this debilitating disease.
The goal of this fundraiser is to support ALS research, in all its variants, in order to support those impacted by this disease in the future. The Robert Packard Center for ALS Research at Johns Hopkins quickly funds cutting edge ALS research around the world and gives hope that someday there will be a cure for ALS. We hope to establish a professorship or endowed ALS research fund in our father's name at John Hopkins. We can all make a difference by helping to support our cause.