The National ALS Registry is a program to collect, manage, and analyze data about people with ALS. It includes data from existing national databases and information provided by patients who choose to participate. Researchers can use Registry data to look for disease pattern changes over time and try to identify whether there are common risk factors among ALS patients. Additionally, the Registry provides updated links for patient resources like ALS clinical trials.
Click here to visit the National ALS Registry.
Pepsi Beverages Company Partners With St. Peter's ALS Regional Center
For over seven years, Pepsi Company continues its partnership with St. Peter's ALS Regional Center.
Pepsi assists St. Peter's ALS Regional Center with transportation of loaned or donated equipment. Utilizing their significant resources of trucks with lifts, and personnel accustomed to lifting, they are able to pick up or deliver large pieces of equipment to ALS patients.
St. Peter's ALS Regional Center is so grateful for this partnership. Thank you to the caring people at Pepsi Beverages Company!
News from DC
- The 2018 Nationbal ALS Advocacy Conference will take place May 12-15, and our advocacy and awareness spokesperson, Scott Daly, will be attending.
- With encouragement from the Rare Disease Congressional Caucus, the NIH saw a $2 billion funding boost in the bi-partisan budget agreement.
- Now that the 21st Century Cures Act has been passed, as well as, the Senate passing the Benefit Act, PALS should begin to see easier access to experimental treatments over a much quicker time. More to come when Scott returns from D.C.