This is a personal statement read by Jennifer Bernay on the 2021 virtual hill day held with the ALS Association Northern Ohio Chapter and members of congress representing the state of Ohio.
Later this month, the ALS Association will host a virtual session focused on the urgent need for timely access to new therapies. Leaders from the U.S. Food and Drug Administration (FDA) and industry companies will listen to people living with ALS speak directly about their expectations for their experiences with the disease and how important it is to have timely access to therapies that have the potential to provide incremental benefit in improving how people feel, function and live.
Recent changes at the Centers for Medicare & Medicaid Services (CMS) will enable people with ALS to receive critical services provided by speech therapists, normally provided at in-person visits, via telehealth during the pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
The ALS Association Florida Chapter recaps fiscal year 2020-21 by discussing accomplishments made that drive forward our vision and some fundraising/event downfalls due to COVID-19.
The Bitner Plante Initiative which funds the ALS Certified Centers of Excellence across Florida received $800,000 to continue our mission for the 2020-2021 fiscal year.
Every May, The ALS Association joins the ALS community in celebrating ALS Awareness Month, a time to bring attention and understanding to this disease. As part of this year’s Awareness Month, we are happy to be launching the ALS Association Blog!