I received the following email this morning from Barbara Newhouse, President & CEO of the ALS Association. I plan to take the next few days to process its contents and will be responding early next week. Please let me know your thoughts... ******* Beginning of Barbara Newhouse’s Email Dated 03/25/2016 ******* Dear Catherine, Thank you for sharing the individual comments with me. I have been reading them and these comments are always a great reminder and motivator for all of us about the importance and urgency of the work we are doing. I can tell you that the entire staff, along with everyone working in our chapters, many of whom have been caregivers themselves, are truly committed to trying to improve the care provided to ALS patients. Thank you for sending your latest recommendations, as well. As you know, our 39 chapters track issues as reported to them by people living with ALS and their caregivers. We have already conducted a survey of our chapter executives to find out what the primary concerns are surrounding Medicare home health benefits, according to ALS patients and their families. We will be using this information to guide further development of educational materials, as well as advocacy activities. In addition, in June, we will be sending a survey to everyone subscribed to our ALS Insights newsletter, which is sent to approximately 10,000 ALS patients and caregivers, so we can gather additional feedback about the current issues they face. This feedback will be critical to helping us develop future goals to advance our mission. We will share the results of this survey with the ALS community. I also want to update you on our progress on a couple other issues. Regarding the educational materials, we have finalized the content areas after consulting with the chapters and other key stakeholders and now we are developing the content, itself. Next week, we will be sharing with the Patient Advisory Council a process so they can review the materials. We are on track to begin rolling these materials out in April. As for the issue of Medicare advocacy, we have now received quotes for services from both the Center for Medicare Advocacy and the National Patient Advocacy Foundation and are currently reviewing them. Warm regards, Barb ******* End of Barbara Newhouse’s Email Dated 03/25/2016 *******