NEALS will be holding its first annual Virtual ALS Clinical Research Learning Institute (CRLI) this month, January 2015, that will discuss amyotrophic lateral sclerosis (ALS). The ALS CRLI will be sponsored by the ALS Association’s TREAT ALS initiative.
The ALS Clinical Research Learning Institute is an intensive program whose goal is to educate attendees about clinical research and any therapies currently under development to address ALS. Through education, it is intended that the attendees become empowered to take on the advocacy of being “Research Ambassadors” for research projects that have the potential to meet the many needs of hundreds of thousands of ALS patients. Both patients and caregivers are encouraged to attend.
The Clinical Research Learning Institute will take place in three separate sessions, with each one lasting about 2 hours. The first session took place Wednesday, January 14 from 3 pm to 5 pm. The second will occur next Wednesday, on January 21, from 3 pm to 5 pm. The third and last session will happen on January 28, Wednesday, from 3 pm to 5 pm.
Participants have to register for each session in order to complete the course, required of them to become a “Research Ambassador”. Further, participants are required to complete all of the 3 sessions, and they have to complete a feedback survey at the end of each session.
Notes About Amyotrophic Lateral Sclerosis
Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease, also known as Lou Gehrig’s disease. This disease attacks the neurons responsible for controlling muscles, gradually causing muscle degeneration and, ultimately the death, of motor neurons.
The disease does not affect the ability so see, taste, smell, recognize touch or hear, and patients maintain their ability to control the bladder and bowel functions until they reach the late stages of the disease. Eventually, as more neurons are affected, patients become paralyzed, and may experience life-threatening heart or respiratory failure.
About 12,000 Americans are diagnosed with ALS and 3.9 cases per 100.000 prevail.
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