3-13-2023 Link to” I AM ALS” education series

Good Morning PALS and CALS,

Today we wanted to share some information on the I AM ALS website. They have done a wonderful education series called ASK ME ANYTHING. The series includes many topics including: Caregiving tips and information, Tracheostomy, feeding tubes and clinical trials.

The I AM ALS website offers much input from people and families living with ALS and can be a wonderful resource for many questions that arise.

Feb 28th, 2023: Clinical Trial Event at 3pm PST

Good Afternoon!

We are excited to share that on Tuesday, February 28 at 6:00p ET I AM ALS and the ALS community will be hosting Ask Me Anything ALS – Clinical Trials. The event will focus on answering questions and sharing people’s experiences with finding, participating in, and preparing for clinical trials,among other clinical trial-related topics. Panelists will include people living with ALS, caregivers and Judi Carey, Research Access Nurse from MGH.

The event is open to anyone to attend and we encourage attendees to presubmit questions when registering for the event, and join in the conversation during the event to share their own experiences.

You can learn more and sign up here!

Please email [email protected] with any questions.

2-22-2023 ALS ADVOCACY UPDATE

In a BIG WIN for the ALS Community and thanks to advocates like you, Medicare announced its proposed decision to cover seat elevation systems for power wheelchairs! Medicare is now asking for public comments before they make their decision final. The ALS Association is collecting comments from the ALS Community and sharing them with Medicare. You can join in support, add your personalized comments, and share why coverage for seat elevation in power wheelchairs is important to you. If you are a person living with ALS, you could share how seat elevation in power wheelchairs is medically necessary and would improve your quality of life. If you are a caregiver, you could share how seat elevation in power wheelchairs does or would improve your life. Take Action Today and share your comments with us! 
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