When Kristin Sedate’s father was diagnosed with ALS in 2014, she stepped in to serve as one of his primary caregivers. Read her story about their journey through ALS and what your donations meant to their family.
The Neurological Clinical Research Institute has recently made significant strides in working toward diagnosing ALS earlier and measuring the progression of the disease. The NCRI imaging team conducted its first successful PET imaging scan of a person living with ALS to measure inflammation in the brain, which is a promising first step in the TRACK ALS imaging biomarker study.
Dr. Nazem Atassi and his team at Massachusetts General Hospital developed a tracer that binds to support cells of the nervous system in the brain. The tracer serves as a marker of inflammation and tracks changes in the cells of the nervous system. The PET imaging scans measure inflammation in the central nervous system, where cells move to the already damaged area of the brain and worsen damage by further harming neurons.
Guest post by Trece Porrata, a patient with ALS
My husband was challenged to do the Ice Bucket Challenge last year when we were visiting friends in Port Aransas with our kids. As he was filling the bucket with ice, he jokingly asked me, “Wait, what am I doing this for?” I replied, “ALS, silly!” realizing that I didn’t actually know what it was.
Quickly, I went into the house to do some research about ALS. I ended up on the ALS Association of Texas website, reading through ALS symptoms. As I went down the list — muscle weakness, fine motor control issues — I noticed that I had been experiencing some of those same symptoms lately. But I didn’t think much of it at the time — after all, ALS is a man’s disease, right? And we had an Ice Bucket Challenge to complete. I went back outside to tell my husband what ALS was, and moments later I was laughing at his reaction to the freezing water, handing them towels and forgetting all about my symptoms.