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ALS Advocacy Conference Gives Hope and a Voice for People with ALS

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ALS Advocacy ConferenceJuan Reyes and his wife Meg attended the ALS Association Advocacy Conference in Washington, D.C. this May. 

My name is Juan Reyes, and I live with ALS. I was diagnosed in October 2015, but in hindsight, I started showing symptoms in late 2013.  What began as slight weakness in my left hand grip and thumb has progressed to severe weakness in all extremities and includes difficulty walking and loss of balance. I now use a motorized wheelchair to get around, and many facets of my life have changed because of ALS.  The big question, of course, is “Why me?” and “How did I get it?”

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Scientists Take Promising First Step in Accelerating ALS Diagnosis

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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.

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