I received an update via email yesterday from Barbara Newhouse, President & CEO of the ALS Association. I provided its contents below. It details the actions now underway to ensure ALS patients are accessing the Medicare home care benefits currently in place and have the support necessary to do so. I will be responding with thanks and gratitude, as well as a reiteration of the long-term Medicare advocacy efforts still needed to expand coverage and resolve systemic issues. Thank you to everyone for your support and efforts to achieve change!!! We're making it happen, but we're not done yet...Let's keep up the energy and momentum!!! Sending my love and gratitude to each and every one of you warriors... Dear Catherine, Thank you for reaching back out and sharing this document. I agree, it is a good summary of the Medicare benefits that are currently in place and I'm sure will be a good resource for individuals. I continue to share your sense of urgency in this, so I would like to take this moment to update you on our comprehensive solution that we will be rolling out. We are in the process of developing printed materials for all communities, educational webinars for our chapters, educational webinars for the public, and phone resources with Medicare specialists. We are on track to deliver at least 12 pieces of educational materials, in addition to producing the webinars. These will be rolled out through April and into May. These materials will better educate social workers and staff in the chapters and certified treatment centers on the actual benefits available through Medicare, eligibility and qualifying requirements, and will address some of the challenges to accessing the benefits. As I mentioned in one of my previous emails, we will be sharing these materials with our patient advisory council and asking for their feedback, as well. In order to help produce the webinars and other materials, we have contracted with the Center for Medicare Advocacy and StayWell (an organization specializing in patient educational materials). We have also contracted with the National Patient Advocacy Foundation to provide telephone support to chapters. The new materials are a great improvement on existing materials and will not only help fill the knowledge gaps that exist between chapters, but will also be available for people who have not yet registered with a chapter. Overall, they will help some patients secure greater benefits than they are currently receiving. Lastly, I want to let you know that we are actively working to introduce legislation that would help speed access to Medicare by waiving the SSDI 5-month waiting period for people with ALS. This will help to ensure people have access to Medicare benefits, including the home health benefit, as well as disability benefits as fast as possible. Catherine, thank you again for your advocacy. You have truly helped us to move forward and create action in an area that I, too, believe is absolutely critical. Warm regards, Barb