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ALS Hope Foundation Profile
ALS Hope Foundation

@ALSHF

Followers
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Following
5K
Media
665
Statuses
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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.

Philadelphia, PA
Joined June 2010
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@LyleOstrow
Lyle Ostrow MD PhD
1 year
(THREAD) Attn: ALS Researchers! There are 3 WEEKS until the FY24 DoD @CDMRP #ALSRP LOI deadlines on June 18th. More info here: https://t.co/cjbRyzS9ra There are no pre-applications this year, thus no initial round of pre-app review to be invited to submit full proposals. 1/
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@BrainstormCell
BrainStorm
1 year
Sara Feldman, PT, DPT, ATP has been the Physical Therapist and Assistive Technology Professional at the MDA/ALS Center of Hope in Philadelphia since 1994. In addition to her clinical work, @saritaapril is the Clinical Evaluator for #clinicaltrials and is passionate about
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@BrainstormCell
BrainStorm
1 year
Terry-Heiman Patterson, MD @Heimanpatterson has been committed to #ALS since 1982 when she started her multidisciplinary clinic at the Hahnemann University in #Philadelphia, PA and has remained dedicated to ALS ever since. Over the years her commitment has continued to grow as
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@NEALSConsortium
NEALS Consortium
1 year
Resource Announcement! Check out the ALS Guide to PT and OT, created by the NEALS Physical Therapist/Occupational Therapist Committee. This guide offers essential information for supporting people with #ALS. #ALSawarenessmonth ➡️
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@MDA_Advocacy
MDA Advocacy
1 year
You still have ⏲️ to send comments to @USDOT on the monumental proposal to improve the #flying experience for passengers with #wheelchairs & mobility devices. 🚨 DOT extended the deadline to June 12! Send in your comments today! https://t.co/wflU0h4iT9
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@iamalsorg
I AM ALS
2 years
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:
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@R1_Crew
Morris R1 Crew
2 years
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
als-geospatial-hub-nonprofit.hub.arcgis.com
R1 is a team of ALS warriors who were brought together by Sandy Morris, and are determined to improve patient cae and experiences in the ALS community.
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@MNDScotland
MND Scotland
2 years
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.
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@LyleOstrow
Lyle Ostrow MD PhD
2 years
@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
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@PremiumXRemark
MND Research
2 years
📢 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 https://t.co/G3fnZYaWHi
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@YourALSguide
Your ALS Guide
2 years
This is an amazing new resource for the ALS community. Thank you Nadia and @ALSTDI team!
@ALSTDI
ALS TDI
2 years
Join us for an exciting Town Hall unveiling the innovative ALS Trial Navigator – a comprehensive resource designed to empower individuals and caregivers in navigating the complex landscape of ALS clinical trials. You can register for this session here: https://t.co/9iW62FIqYm
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@MDAorg
Muscular Dystrophy Association
2 years
#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: https://t.co/Ubtc1ucORu #MDAconference
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mda.org
Following the keynote address, an expert panel discusses the challenges of neuromuscular disease in the age of therapies led by Sharon Hesterlee, PhD, Chief Research Officer, MDA.
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@alsassociation
The ALS Association
2 years
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: https://t.co/VIjtFOosDg
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@ALSHF
ALS Hope Foundation
2 years
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!
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@RunningMama0522
Mandi
2 years
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
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@alsadvocacy
ALS Advocacy
2 years
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@End_The_Legacy
EndTheLegacy
2 years
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. https://t.co/8QnRA8FUYh
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endthelegacy.org
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@LiveLikeLou4
Live Like Lou
2 years
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. 📱
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@MDA_Advocacy
MDA Advocacy
2 years
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 📰:
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tsa.gov
When Mindy Henderson has a good customer service experience, she goes straight to the top to say so. Henderson, the editor-in-chief of the Muscular Dystrophy Association’s (MDA) Quest Media and a...
@TSA_Pekoske
David P. Pekoske
2 years
At @TSA, we’re committed to customer service during screening. I’d like to thank Mindy Henderson from @MDAorg for sharing her experience & giving us the chance to engage further on accessible travel. Kudos to #TeamTSA for exemplary customer service. More: https://t.co/vq03lZs4mw
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@MDA_Advocacy
MDA Advocacy
2 years
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‼️ https://t.co/McbnrfEPmb.
@MDAorg
Muscular Dystrophy Association
2 years
MDA is supporting the #ALSbetterCareAct, a bipartisan initiative to enhance access to quality, multidisciplinary care for people living with #ALS. Help move this legislation forward by raising your voice & contacting your representative:  https://t.co/innO2CcQIH @MDA_Advocacy
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