Barbara Newhouse assured me of her organization’s commitment to urgently work with the Center for Medicare Advocacy to correct the problems ALS patients are encountering when attempting to access their existing Medicare benefits. That was three weeks ago. I have not received an update from her, nor from anyone else at the ALS Association National, as of the moment I posted this update. I am publicly (and politely, thank you very much) asking for an immediate update. Specifically, what is the course of action and timeline being proposed, and will the ALS Association fully fund this effort? At the risk of sounding like a broken record, the lives of ALS patients are at stake. The home health services currently allowed for by Medicare are minimal, yes, but at least they provide some measure of assistance and relief to the overburdened, overwhelmed community (if they were attainable). That goes a long way when you’re desperate. We must do what’s necessary to ensure the benefits allowed for by Medicare equal the reality of what is actually being made available and received. I genuinely appreciate the dedication of the ALS Association National to improve home care for the ALS community it serves. I look forward to receiving a response and getting this done. While I will be having a tracheostomy on Wednesday, August 17th, I will be taking my Tobii to the hospital with me (a girl has to stay busy…) and will, therefore, remain in the communication loop. Thank you.