ALS Hope Foundation

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.

[Lyle Ostrow MD PhD @LyleOstrow]

(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/

[BrainStorm @BrainstormCell]

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 assistive technology research ⚡️ She has been a member of the NEALS Executive Committee and co-founded the NEALS Physical Therapy Committee (@NEALSConsortium).

With a strong focus on #education, @saritaapril teaches future physical therapists, conducts webinars, and presents on assistive technology to empower healthcare professionals 👩‍💻 She also serves as the Clinical Liaison for the ALS Hope Foundation (@ALSHF) and is actively involved with @ALSMNDAlliance.

Recognized for her contributions, @saritaapril received the International Alliance’s Allied Professionals Award in 2018. Advocating for people with #ALS on local and international levels, she strives to ensure their voices are heard 📣 Her dedication to making a difference in the #ALS community has been further fueled through having close friends recently diagnosed.

She believes that her most meaningful contribution lies in the connections she forms with individuals living with #ALS and their families, providing support and guidance through their journey 💫

#ALSawarenessMonth #BetterTogether

[BrainStorm @BrainstormCell]

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 she strives to make a difference for people living with ALS.

Academically, Dr. Heiman-Patterson does both clinical and basic research in ALS which includes clinical trials, clinical studies to learn more about the disease, understanding the cost of disease, addressing #health inequities, and understanding the influence of #genetics on the severity of the disease.

Currently, Dr. Heiman-Patterson is working on #brain computer interfaces to bring technology to people with ALS. Dr. Terry Heiman-Patterson’s goal is to make a #difference for the people living with ALS today while working towards better treatments and care.

Dr. Heiman-Patterson’s advocacy efforts include her role as President of the ALS Hope Foundation. The @ALSHF works to push forward initiatives that improve the care for people living with ALS and their access to treatments. In addition, she is an active advocate for the ALS Better Care Act.

To learn more about the impact of the ALS Hope Foundation please visit: https://t.co/y1sVQmw7lk

[NEALS Consortium @NEALSConsortium]

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 ➡️ https://t.co/wdAfk0Kkww

[MDA Advocacy (Archived) @MDA_Advocacy]

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

[I AM ALS @iamalsorg]

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: https://t.co/Z8j8ihpUtg

[Morris R1 Crew @R1_Crew]

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 https://t.co/b3OU6SGfII

[MND Scotland @MNDScotland]

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.

[Lyle Ostrow MD PhD @LyleOstrow]

@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

[MND Research @PremiumXRemark]

📢 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

[Your ALS Guide @YourALSguide]

This is an amazing new resource for the ALS community. Thank you Nadia and @ALSTDI team!

[Muscular Dystrophy Association @MDAorg]

#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

[The ALS Association @alsassociation]

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

[ALS Hope Foundation @ALSHF]

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!

[Mandi @RunningMama0522]

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 Advocacy @alsadvocacy]

#kickals

[EndTheLegacy @End_The_Legacy]

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

[Live Like Lou @LiveLikeLou4]

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. 📱

[MDA Advocacy (Archived) @MDA_Advocacy]

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 📰: https://t.co/GOpGcsFwob

[MDA Advocacy (Archived) @MDA_Advocacy]

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.