Day 25 of ALS Awareness Month: check out the Pete Frates Home Health Care Initiative from Mass Chapter of the ALS Assoc.
Stephen appeared on PBS tonight with Nancy Frates to discuss the need for a 501(c)(3) home health care initiative for persons with ALS. With Radicava, patients are going to be living longer (hooray!) which will bankrupt more families who want to keep their pALS at home rather than in a nursing home (WTF?). The ALS Association Massachusetts Chapter is beginning a pilot program to help address just that.
Check out this WGBH Greater Boston segment on the financial struggles of living with ALS.