Melinda Osborn - ALSA STL Care Service Coordinator

02/13/2024

The ALS Better Care Act would ensure that ALS clinics continue to provide quality, interdisciplinary care for ALS patients by creating a supplemental, facility-based payment in Medicare for ALS-related services.

Urge your Members of Congress to cosponsor the ALS Better Care Act (H.R. 5663 / S. 3258) today!

09/19/2023

09/19/2023

09/01/2023

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

06/13/2023

https://fox2now.com/news/community/living-with-als-loren-stuckmeyers-story/ Thanks Fox 2 for this nice highlight.

Loren Stuckmeyer used to spend his days outside boating and traveling with his family, but it May of 2020 his life took a turn when he was told he had ALS or Lou Gehrig’s Disease.  Loren…

04/25/2023

Another Drug Treatment approved today by the FDA!

April 25, 2023 was the second time in less than a year that the FDA approved a drug to treat ALS! The newly approved drug, tofersen, was developed to treat p...

11/22/2022

REMINDER:
To ensure every eligible person who can benefit from RELYVRIO (formerly known as AMX0035) will have access to it, Amylyx will provide support to healthcare professionals, people living with ALS, and their loved ones through the Amylyx Care Team (ACT) Support Program.

ACT provides people living with ALS who have been prescribed RELYVRIO, and their loved ones, with a dedicated, single point of contact to guide their treatment journey. ACT will aid with navigating through insurance in an effort to overcome potential barriers to access and provides financial assistance options to eligible individuals with out-of-pocket costs. People with ALS, their caregivers, and healthcare professionals in the U.S. can now call 1-866-318-2989 or email amylyxcareteam@amylyx.com to speak with an ACT team member.

08/30/2022

I hope everyone who may be interested got to see this ....

International ALS MND Symposium Fellowships for People with ALS MND

07/13/2022

Such a heart-warming story!

Roland Mandel watched from the stage as Pearl Jam played him a cover of Ramones' "I Believe in Miracles."

05/19/2022

Some of you may be interested in Radicava now that it may be given in the oral form vs infusion. If you have time today, hop into the educational webinar 1PM Central Time https://app.webinar.net/2x9gJkQXWoz

12/10/2021

Evening / Overnight Aide sought for 59 year old woman with advanced rare disease, ALS. You will be asked to attend to her simple requests (she communicates well with a speech device) and you will be giving family respite during the nightime. Please inquire for more details. Pay commensurate with experience.

09/24/2021

Thank you Studio Bliss Photography !

07/21/2021

The recall is due to issues with PE-PUR foam, used to reduce sound and vibration, breaking down and potentially entering the device’s air pathway.

05/12/2021

Were you dx with ALS in the past year? Do you use the search engine Bing? Help contribute to this research study!
https://youtu.be/xLpmCp2F6FM

We have developed a model to predict ALS from people’s interactions with search engines. The goal of this study is to validate this model using data from cli...

03/31/2021

Grief can be overwhelming, and isolating. But you are not alone. Our Beyond ALS Grief Support Group is about transforming the pain of grief into hope. This group will take participants out of the isolation they may be experiencing and allow them to process thoughts and emotions in a secure therapeutic setting, lead by a certified counselor. The next group begins meeting virtually April 8. To find out more, visit: https://bit.ly/BeyondALSGriefSupport

All Meetings will be virtual via Ring Central. Instructions to follow.

03/05/2021

The Spring 2021 Survey is now open to new and returning participants! Tell us how ALS impacts you and your family. Spring 2021 Topic: ALS Caregiver Needs

ALS Focus is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and burdens. Learn more!