Rare Disease Day® is an opportunity to recognize strength in coming together. It is estimated there are more than 7,000 rare diseases affecting 25-30 million Americans. That means one in ten Americans suffer from a rare disease, including people living with ALS.
ALS Focus recently launched its third survey, gathering data from ALS caregivers to identify the unique needs and challenges of ALS caregiving. Responses to this survey will help translate the caregiver experience into action and influence ALS programs and policy decisions. ALS Focus Director Dr. Sarah Parvanta detailed the questions her team is asking in the current survey during a recent episode of Connecting ALS. A portion of that conversation has been edited and condensed below.
The Marcia LaRiche Scholarship Fund can assist dependent sons and daughters of parents who have been diagnosed with Amyotrophic Lateral Sclerosis (ALS) living in northeast Ohio finance their education at a postsecondary institution of their choice.
David Tomasso and his family are raising money for The ALS Association Florida Chapter while running the virtual Disney Marathon! To support his efforts, go to TeamTomo-FL.com to make a donation. In the words of Jerry (living with ALS), let's make that $26,200 for everybody fighting ALS, a terrible, terrible disease.
Connecting ALS recently sat down with Dr. Ericka Greene, Director of the Neuromuscular Clinic Houston Methodist Stanley H. Appel Department of Neurology to learn more about her personal experience working in ALS research and growing up in the STEM field to understand this trend from her perspective.