Category: Update

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3-7-2023 ALSA Action Alert

It’s that time of the year again when your members of Congress will decide how much they will fund critical programs for the ALS Community.  We are holding a webinar for all advocates to make sure you and everyone impacted by ALS are empowered with the latest information and tools to make your voices heard! Find out how you can advocate for new federal dollars for ALS Research. Register to join us for our advocacy webinar on March 21, 2023 from 12:00-2:00pm ET (11:00am – 1:00pm CT, 9:00am-11:00am PT). You will learn what federal programs need new funds for ALS research and how you can lobby your Senators and Representatives. 
Register
https://als-org.zoom.us/webinar/register/WN_SLaAySPIQGC1Q4PeAkovpQ
It is critically important that people with ALS, their families, and the entire ALS Community advocate together with our U.S. Representative and Senators to secure funding for ALS research and improve federal programs. Your advocacy helps Congress understand the real-life impacts of ALS research funding that lead to new treatments for the ALS community. To take action with your members of Congress, please register to join us for a webinar on March 21, 2023 from 12:00-2:00pm ET (11:00am – 1:00pm CT, 9:00am-11:00am PT). During the advocacy webinar, you will hear from volunteer leaders, members of Congress, experts in ALS research, the ALS public policy and advocacy team, and most importantly, how you can request your members of Congress to sign this year’s “ALS Research Dear Colleague” appropriations letter to support ALS research funding. We hope you are able to join us! Disclaimer: **We anticipate this to be a widely attended event and we may reach registration capacity before the event. The event will be recorded and shared online for viewing should you be unable to join us live.  
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The ALS Association – 1300 Wilson Blvd. – Suite 600 – Arlington, VA 22209202.407.8580 – als.org 
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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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Who We Are…….ALSSO 2023

The ALS Service Organization (ALSSO)

ALSSO (The ALS Service Organization) was originally organized in Spokane, WA in 2003 by a group of individuals with family members diagnosed with ALS for the benefit of supporting each other through friendship and support group meetings.

We received our non-profit status in December of 2008.  Originally, our goal was to meet and share concerns and experiences. Over the years and with support through donations and fundraisers, we were able to expand by helping with financial assistance for adaptive equipment, vans, home modification projects, caregiving expenses and other needed financial help within our means and by-laws.

All members of ALSSO are volunteers. Our governing board is all volunteer.  Over 99% of our donations go directly to people living with ALS in our region which covers Eastern Washington, North Idaho and Western Montana.

We meet monthly to allow those with ALS, along with their loved ones and supporters, time to share their struggles and solutions with one another.  It is a time of much needed emotional support.

We are pleased to be able to work alongside the other area foundations and groups which support people living with ALS, such as The ALS Association (ALSA), Matt’s Place Foundation, Catholic Charities, Team Gleason, and The Providence Spokane ALS Clinic at St. Luke’s.

Often time ALSSO is confused with The ALS Association (ALSA).  While we work with them (currently, Glen Garcia is their Patient Care Coordinator who is our contact and advocate), we are not associated with them in any other way.  We are a totally separate organization with different missions.  While they can work with you to provide professional help and a loan locker, we are about the friendship and interpersonal relationships to help one another.

We hope this helps you understand our ALS Service Organization (ALSSO).