A user-friendly website where people living with ALS, caregivers, and professionals can find educational guides, expert video clips, resources, and more...
Joined September 2022
- Tweets169
- Following126
- Followers409
- Likes26
Your ALS Guide retweeted
Today on Lou Gehrig Day, GeoALS & #MLB commemorate #ALS 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 storymap: arcg.is/1Xjfvy.
Your ALS Guide retweeted
Thank you for your leadership on ALS, @SenatorDurbin, and for sharing our story with @SecKennedy. ALS is urgent and we don't have time to waste. We look forward to working with you, Secretary Kennedy, on research and access to promising treatments.
Your ALS Guide retweeted
Don't forget about Lou Gehrig Day! Almost all the MLB teams have announced dates for their Lou Gehrig Day games; check out our landing page to find them all! iamals.org/lou-gehrig-day-20…
Your ALS Guide retweeted
Thank you, ALS community! We’re grateful to our Congressional champions for recognizing the urgency of sustaining research funding for ALS, a service-connected disease.
We are so grateful to all of our volunteers, partners, and all ALS advocates who rallied to make this happen.
Your ALS Guide retweeted
Urgent action: The House just voted and passed a budget that removed $40 million in ALS research funding. Take a minute to tell your Senators that ALS research needs to be included in the budget. This ALS research is vital. Please share widely. iamals.org/cdmrp2025/
Your ALS Guide retweeted
Join me, Dr. James Barry of @MGHNeurology, Shubhangi Lal of FNIH & ppl w/lived experience at the @everything_als webinar on Feb 5, 2025 @ 7 pm ET on "Revolutionizing ALS Research:
AMP ALS, ALL ALS & You!”
Looking forward to connecting with the community!
everythingals.org/futureeven…
Your ALS Guide retweeted
Don’t miss our webinar on January 15th: "Expanded Access Programs in ALS: What Have We Learned, Where Do We Go from Here?"
🗓️ Save the date and register now: us06web.zoom.us/webinar/regi…
Your ALS Guide retweeted
Airport security shouldn’t be a Veteran’s hardest mission! ✈️
The House passed the VETS Safe Travel Act, which gives FREE @TSA PreCheck to eligible #Veterans, ensuring they can #TravelWithDignity.
Help us! Send a #PVActionForce letter to your Senators: votervoice.net/PVA/Campaigns….
ALT An outline of a person in a wheelchair receiving an invasive pat-down from a TSA worker. Next to them is text, “Wheelchair users still face invasive TSA pat-downs.” At the bottom, in a white banner with a navy-blue line at the top, is a navy-blue and red Paralyzed Veterans of America and Pushing Access Forward logo.
Your ALS Guide retweeted
Your advocacy matters! The bipartisan Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act has officially passed the House! It's time for the Senate to pass this crucial legislation to ensure veterans receive the care and support they deserve #ALS
Your ALS Guide retweeted
Please join us in asking Congress to pass the Elizabeth Dole 21st Century Veterans Healthcare and Benefits Act. Our Veterans with ALS need help THIS YEAR so they can remain at home with their families for their care. bit.ly/3zivD2c
Your ALS Guide retweeted
Over the past 13 years, I've been documenting our journey with ALS. My aim has always been to see if we can discover peace and freedom with a love of Life, in the midst of extreme adversity. Being recognized at The 2024 ESPYS is not just an honor, but a powerful platform to further help and serve others. Thank you, ESPN, for this incredible accolade.
Your ALS Guide retweeted
Two of the amazing people who made Lou Gehrig Day a reality are Brian Wayne "BWayne" Galentine and Adam Wilson. We sadly lost BWayne in 2020 and Adam earlier this year. To honor their extraordinary legacies, join us in Bringing BWayne & Adam to LGD events: iamals.org/action/bring-bway…
Your ALS Guide retweeted
We are in awe of the work being done by our friends at Matt's Place Foundation. Their latest project is a massive labor of love -- a web series about all things ALS and housing. The first two episodes are out now!
mattsplacefoundation.org/hop…
Your ALS Guide retweeted
Lou Gehrig Day is happening THIS FRIDAY in lots of cities around the country -- if you're going to a game on June 2nd, make sure you've signed up so you can get your tickets and meet up with your fellow advocates. #IAA4LOU
iamals.org/join-us-for-lou-g…
Your ALS Guide retweeted
Breaking news: The FDA has approved Tofersen for SOD1 ALS! @US_FDA thank you for living up to your promise of regulatory flexibility for ALS. ALS community: YOU made this happen with your relentless advocacy. Remember that. Stay tuned for updates on access to this treatment!
Your ALS Guide retweeted
Our first in-person camp for @HopeLovesCo's 10th anniversary is in NJ on May 19-21! 🎉
CAMPER SIGNUPS! buff.ly/3j5Sje9
...And just 2 weeks later is our camp in IL, June 2 -4!
CAMPER SIGNUPS! buff.ly/3j5Sje9
VOLUNTEER SIGNUPS! buff.ly/3xX6MwQ
Your ALS Guide retweeted
I love seeing the organizations come together to empower the community! There is only one team here. #TeamALS
Your ALS Guide retweeted
We are thrilled to announce that Synapticure has received IRB approval to launch a study treating presymptomatic carriers of pathogenic ALS-associated genes with Riluzole.
What, exactly, does that mean?
bit.ly/3mULoX5