According to a story from Upstate Medical University, the college’s ALS Treatment and Research Center has been a certified center of excellence for research and clinical care that has helped improve quality of life and increased lifespans for ALS patients. Like many similar care providers, the COVID-19 pandemic complicated its efforts. Not to be stymied, however, the center commenced an at-home monitoring program in July 2020.
The monitoring program was initiated with just $5,000, but due to its success it has continued to receive much greater levels of support, allowing it to improve and expand in scope.
About Amyotrophic Lateral Sclerosis (ALS)
ALS, otherwise known as Lou Gehrig’s disease or motor neuron disease, is a rare, degenerative disease that causes the death of nerve cells associated with the voluntary muscles. Little is known about the origins of ALS, with no definitive cause in about 95 percent of cases. The remaining five percent appear to inherit the disease from their parents. Symptoms initially include loss of coordination, muscle weakness and atrophy, muscle stiffness and cramping, and trouble speaking, breathing, or swallowing. These symptoms worsen steadily over time; most patients die because of respiratory complications. Treatment is mostly symptomatic and the medication riluzole can prolong life. Life expectancy after diagnosis ranges from two to four years, but some patients can survive for substantially longer. To learn more about ALS, click here.
Last year, the ALS Center received feedback from the 24 patients that had been involved in the home monitoring program that was largely positive; many feared in-person visits due to the pandemic or were otherwise incapacitated and preferred the home monitoring. The center received a $300,000 grant over a two year period in 2021 and was able to expand the program to 50 patients.
This funding also included Atrium Health at a location in North Carolina, which hoped to reproduce the at-home monitoring model in that region. In May of this year, the ALS Center received an additional $50,000 in funds from the ALS Association’s Upstate New York Chapter. This was part of an annual gift that the center has been getting since 2016, and it is expected to continue as long as the center maintains its Certified Treatment Center of Excellence status.
“This growth we have experienced I believe is a direct impact of the quality of care we are able to deliver with at-home monitoring.” – Eufrosina Young, MD, Director, ALS Research and Treatment Center, Upstate Medical University