ALS Hope Foundation @ALSHF
The mission of the ALS Hope Foundation is to make a difference in the lives of people living with ALS through Care, Research and Education. alshf.org Philadelphia, PA Joined June 2010-
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ALS Hope Foundation retweeted
The 2024 I AM ALS Community Summit and flag event will be from May 29th - June 1st, and there is still plenty of time to add your name or a loved one's name to a flag. Add a name here: iamals.org/action/2024fla…
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ALS Hope Foundation retweeted
The ALS Clinic Advisor is a powerful resource because of YOU! Your insights help identify best practices that can improve the quality of care for the ALS Community! To learn more, please visit …ospatial-hub-nonprofit.hub.arcgis.com/pages/r1-commu…
ALS Hope Foundation retweeted
Breaking news - tofersen has been recommended for approval by the EMA for the treatment of people with SOD1 MND. We will provide more information soon on how we are continuing to work with @mndassoc and @MNDoddie5 to understand this outcome and what it means for people in the UK.
ALS Hope Foundation retweeted
@alsassociation @MDAorg @LesTurnerALS @iamalsorg Don't forget @ALSHF! I see Dr. @HeimanPatterson in your pic and she has worked for years to collect the data showing the true costs of providing ALS multidisciplinary care, and the disparate costs and quality of care in different communities. #BetterTogether #EndALS
ALS Hope Foundation retweeted
📢 The International Symposium on #ALS #MND is back for its 35th year! 📢 📆 6 – 8 December 2024 📍 Montreal, Canada ✍️ Abstract submission opens 7 May 💻 Virtual option (incl. selected live-streamed sessions) More info ⬇️ #ALSmndsymp symposium.mndassociation.org
ALS Hope Foundation retweeted
ALS Hope Foundation retweeted
#MDA is pleased to announce @limpbroozkit, #ALS patient and advocate, as the Keynote Speaker at the 2024 MDA Clinical & Scientific Conference. Her presentation will take place on March 4 at 10am ET. Read here for more details: mda.org/press-releases… #MDAconference
ALS Hope Foundation retweeted
We joined #ALS physicians, @MDAorg, @LesTurnerALS, and @iamalsorg on the Hill yesterday to advocate together for a bill to improve access to ALS clinics for people living with ALS. Join us and ask your lawmakers to cosponsor the ALS Better Care Act: als.quorum.us/campaign/51390/
Dr Terry Heiman-Patterson joined with other ALS organizations & advocates to discuss the ALS Better Care Act (HR 5663/S.3258). This is critical legislation that will provide essential access to multidisciplinary care and clinical trials for people with ALS. Thank you!
ALS Hope Foundation retweeted
This past weekend I had the opportunity to serve as a Research Ambassador Mentor for a class of the @NEALSConsortium Clinical Research Learning Institute. It was a great class filled with people ready to be more empowered and educated consumers of science. #neverstoplearning
ALS Hope Foundation retweeted
ALS Hope Foundation retweeted
We debuted as a formal non-profit in 2023 with support from @ALSHF . One year later - our self report! And at the bottom, a request. endthelegacy.org/latestnews
ALS Hope Foundation retweeted
Need a last-minute gift for your favorite person living with ALS? 🎁 Check out our friend @SarahNauser's gift guide. She posted this handy list, and we asked her if we could share it! 💙 These items can be controlled with an eye gaze device and/or other smart home technology. 📱
ALS Hope Foundation retweeted
Sharing great news from our partnership with @TSA, covering @MindyHSpeaks's experience with excellent customer service at @AUStinAirport, #MDA's #AccessibleAirTravel campaign, #TSACares, and much more. Check it out 📰: tsa.gov/about/employee…
Sharing great news from our partnership with @TSA, covering @MindyHSpeaks's experience with excellent customer service at @AUStinAirport, #MDA's #AccessibleAirTravel campaign, #TSACares, and much more. Check it out 📰: tsa.gov/about/employee…
ALS Hope Foundation retweeted
The ALS Better Care Act, championed by bipartisan leaders, ensures #Medicare coverage for vital #ALS services like physical therapy, counseling, and more. We're fighting for better access to high-quality #ALS care. Support the ALS Better Care Act‼️votervoice.net/MDA/Campaigns/….
The ALS Better Care Act, championed by bipartisan leaders, ensures #Medicare coverage for vital #ALS services like physical therapy, counseling, and more. We're fighting for better access to high-quality #ALS care. Support the ALS Better Care Act‼️votervoice.net/MDA/Campaigns/….
ALS Hope Foundation retweeted
We are sharing three blog posts on our experiences and learnings from the ALS/ MND meetings in Basel this year. The first is up now, focused on exciting developments in the field for our community endthelegacy.org/latestnews
ALS Hope Foundation retweeted
Many congratulations to Martin Turner on receiving the 2023 Sean M. Healey Prize for Innovation in ALS.
Many congratulations to Martin Turner on receiving the 2023 Sean M. Healey Prize for Innovation in ALS.
ALS Hope Foundation retweeted
Our incredible friends at Matt's Place just dropped a new episode of their Hope & Housing ALS Home Renovation series! Check it out, and while you're there, subscribe to their YouTube channel to get notified of new episodes: youtube.com/watch?v=5ktczn…
ALS Hope Foundation retweeted
@LiveLikeLou4 @ginaGib68993499 @phidelt Photos of them helping my son’s family last month. They raked 50 bags of leaves! We are so grateful for their commitment to serve the ALS community.
ALS Hope Foundation retweeted
Biomarker Qualification for Neurofilament Light Chain in ALS: Theory and Practice - Benatar - Annals of Neurology - Wiley Online Library onlinelibrary.wiley.com/doi/10.1002/an…
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