Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. - Margaret Mead Fasten your seatbelts, people. We're making great progress but are just getting started. There remains a long road ahead for us all, and we will not be settling for anything less than the full support, coverage and respect we deserve. As a united community, we will get this done. Thank you so much for your continued support. Love and appreciate you all... Today, I responded to the update from Barbara Newhouse, President & CEO of the ALS Association, sent to me last week. Here is what my email said: Dear Ms. Newhouse: Thank you for providing the timely update. It sounds like some progress is being made, which I find encouraging. I cannot stress enough the urgency of correcting and improving home care issues for ALS patients quickly. Consider it a fire that needs to be put out. Everything else can wait...There is no greater priority. The well being of those you serve is at stake. A group of ALS community advocates created the "Medicare Home Health Services - ALS Patients" document I attached to this email. It details how a patient can access their Medicare home care benefits currently in place. The process is frankly a mess, but at least it ultimately provides some measure of relief to those suffering. It has already been shared on social media, and the community's response has been that of overwhelming gratitude. People are being perpetually told across the board of your chapters' clinics, centers and support staff Medicare does not cover home care benefits. This can and must be fixed immediately. Please feel free to use the document to educate your organization. A simple email from you to all staff would get the ball rolling... As to the improvements in Medicare home care coverage and corrections of systemic issues needed, what specifically will you be advocating for and by when? I understand this process takes time and want to ensure we are steadily making progress. I fully intend to follow this matter to its resolution and won't settle for less. I will do absolutely everything in my power to assist the process along. I am looking forward to the day the ALS community has the coverage and support it needs and deserves. The disease is a beast on its own without the added hassle and worry of insurance coverage. I look forward to hearing from you. Sincerely, Catherine Scott Here's the attachment: Medicare Home Health Services - ALS Patients (PDF) https://drive.google.com/file/d/0B0yxxVCJLk5la1JOTUJNUW5SVFE/view?pref=2&pli=1