ALS Clinic Advisor

06/10/2025

We hate that this t-shirt has to exist but we love the creativity behind it. Our friend Ed created it as he works to bring about change for all battling ALS.

Now please follow the alien's request and complete an ALS Clinic Survey today. https://bit.ly/448GkkF

06/02/2025

Today on , GeoALS & commemorate warriors.

86 years after Lou gave his famous speech, ALS victims have the EXACT SAME prognosis.

Help fix this via one of the calls to action at the bottom of this wonderful storymap tribute to Lou Gehrig written by Will Hackney:

The life and times of Henry Louis Gehrig

05/16/2025

Hats off on Global Accessibility Awareness Day to all those out there working toward fairness and for people with disabilites. Team Gleason, Tobii Dynavox, speech therapists, Patrick Dolan, and so many more have been leading the way.

05/05/2025

We just released the Glen Rouse ALS Legislative Viewer 2.0, which provides information on each U.S. legislator's support for ALS policies and helps educate Congress on the ALS communities in their state and district. It's a great tool for ALS advocates who are working with Congress to ensure funding for ALS research and access to effective treatments and therapies.

Short overview video https://youtu.be/nBxY4QUmHhY?si=VLOUOP8DFLL_S3tu

Glen Rouse ALS Legislative Viewer 2.0 https://experience.arcgis.com/experience/432276c3289a4839be09c409b817ebd2

Glen Rouse ALS Legislative Viewer version 2.0 provides information on each U.S. legislator's support for ALS policies and helps educate Congress on the ALS c...

04/27/2025

The U.S. Department of Health and Human Services (HHS) proposes to eliminate federal funding for the CDC National Registry and Biorepository. This will result in decades of years of ALS research being lost.

I created this video to explain the importance of the Registry and the impact eliminating the Registry. https://youtu.be/1ngmbjqH-fg?si=cQCCRMuIabsI4OVn

Please voice your support for the Registry and ALS funding by submitting this I Am ALS form, which lets your Legislators know that the Registry & ALS funding is important to you: https://www.iamals.org/research-funding2025/
It takes less than 90 seconds to complete.

Please share this post with your social networks.

Since 2010, the CDC National ALS Registry has provided essential funding for ALS research, has maintained the first national ALS registry, and has worked wit...

02/09/2025

.Patrick Dolan congrats for being recognized and honored by Team Gleason for all your hardwork mapping ALS. Thank you.

01/14/2025

01/14/2025

We developed a map to show the ALS Clinics in relation to the LA fires. The map shows the latest fires and air quality. ALS IN Wonderland Foundation is providing FREE housing to ALS families in LA that have been affected by the fires. Contact their office at 501-492-6955.
https://arcg.is/0DyP8D
Please stay safe my fellow pALS and cALS in Southern California.

01/10/2025

https://www.facebook.com/share/p/1Pc9DApoEc/

🙏

01/02/2025

https://www.nytimes.com/2025/01/02/well/brooke-eby-als-tiktok-instagram.html?smid=nytcore-ios-share&referringSource=articleShare

After being diagnosed with A.L.S. in 2022, Brooke Eby could have turned inward. Instead, she opened up — and found a fan base online.

12/27/2024

The ALL ALS Clinical Research Consortium study website (all-als.org) is live. This comprehensive website offers valuable information about the groundbreaking Access for All in ALS (ALL ALS) initiative including an overview of the ALL ALS consortium and its protocols, detailed eligibility criteria for the ASSESS and PREVENT studies, a Participant Interest Form for individuals seeking more information or wishing to connect with a study site, and more.

The ALL ALS consortium, funded by the National Institutes of Health, aims to transform ALS research by creating a large-scale, centralized infrastructure for data collection from people living with ALS, those at risk of developing ALS, and healthy controls. With 35 clinical sites across the United States and Puerto Rico, ALL ALS is committed to fostering community engagement, equity, and inclusion in ALS research.

Visit all-als.org to learn more about this important initiative, explore opportunities for participation, and to complete the Participant Interest Intake Form. Your involvement could contribute significantly to advancing our understanding of ALS and accelerating the development of new therapies.

12/12/2024

We salute Dr. Kelly Gwathmey, director of the VCU Health ALS Clinic and chief of Neuromuscular Medicine, for her hard work on behalf of people with ALS.

She's also been a helpful supporter of the ALS Clinic Advisor and we are grateful for her time and insights.

By Joan Tupponce Unacceptable. That’s how neurologist Kelly Gwathmey feels about the up-to-15-month wait patients may endure before being diagnosed with ALS. This problem is also why she and her team launched a first-of-its-kind pilot program known as the VCU Health Rapid Access ALS Program. &...