C Lebovits retweeted
We are so grateful to new FDA Commissioner @FDA_KyleD and the entire agency for their commitment to regulatory flexibility and progress. It was an honor to be in the room with other rare disease leaders to recommend concrete changes and advance therapies.
C Lebovits retweeted
Lou Gehrig's story is part of our history.
People living with ALS are fighting for their future.
Scientific progress is advancing rapidly. People living with ALS deserve every opportunity to benefit from it. @RCJAPH
bit.ly/4dXu22y
#LouGehrigDay #StrikeOutALS
C Lebovits retweeted
Moms filed Citizens Petition asking the @US_FDA to approve #NurOwn after it helped their loved ones with ALS "live longer & live better"
biospace.com/policy/patients…
#EndALS #patientadvocacy #GoodTrouble #mamabears
@BrainstormCell
C Lebovits retweeted
We have exciting news! Thanks to our generous sponsors, virtual registration for #ALSNexus is now FREE for people living with ALS and their caregivers! We're grateful for the support that makes this possible and hope you’ll join us. Register today to attend ALS Nexus: alsnexus.org
C Lebovits retweeted
A Citizen Petition was submitted to the FDA requesting a new review of data supporting NurOwn®.
We remain focused on advancing the ENDURANCE Phase 3b trial and exploring pathways that could bring meaningful options to people living with #ALS.
Here: bit.ly/4nArET5
C Lebovits retweeted
Have you registered for the 2025 NEALS Annual Meeting? 🧠
📅 October 7–10 2025
📍 Clearwater, FL
Join us in person or virtually for four days of collaboration, science, and community in ALS research.
🔗 Learn more & register today: meeting.neals.org/
C Lebovits retweeted
I’m excited to speak again tomorrow on the National Mall at the @iamalsorg ALS Community Summit in front of 6,000 blue flags, including one with my mother’s name on it. #EndALS #ALSisHere #SoAreWe
Today, we’re here on the National Mall, steps from the White House & the Capitol, to be visible & spread awareness. We’re planting 6,000 blue flags to represent the 6,000 people diagnosed with ALS each year. #ALSisHere, but #SoAreWe – & we’re not going anywhere until we end ALS.
C Lebovits retweeted
Support isn’t always loud—but it can change everything.
When Tony Rosello’s family was overwhelmed, one friend stepped in and stayed.
This #ALSawareness Month, we’re honoring moments of quiet strength.
#MomentsThatMattered #BetterTogether #ShowUpForALS #SupportIsStrength @RealBlundetto
C Lebovits retweeted
“When I was diagnosed with ALS, I chose not to stay silent.” Wendy Hendrickson shared her story to raise awareness—and found purpose in the process.
#MomentsThatMattered #ALSawareness #BetterTogether #ShowUpForALS #SupportIsStrength
C Lebovits retweeted
🗓️🌟May is ALS Awareness Month!
Join us as we highlight the latest in ALS research, honor those affected, and work together to accelerate treatments. Follow along and help spread awareness. #ALSawarenessMonth #NEALSforALS #ALSawarenessMonth #NEALSforALS
C Lebovits retweeted
Absolutely true
🇺🇸 STEVE JOBS: THE BEST MANAGERS ARE GREAT CONTRIBUTORS... WHO NEVER WANTED TO BE MANAGERS
"At Apple, we thought hiring professional managers would make us a big company.
It didn’t work—most were bozos who could manage but couldn’t do anything else.
The best managers?
Great individual contributors who never wanted the job but took it because they knew no one else could do it as well."
Source: BusinessX on IG
C Lebovits retweeted
#ThankYouVeterans for your sacrifice. 🇺🇸 We honor the extraordinary strength of those who continue to battle an #ALS diagnosis, in addition to your service. Your resilience inspires our mission at @BrainStormCell to help end the suffering caused by #ALS. 🤝
#BetterTogether #EndALS
C Lebovits retweeted
This #VeteransDay, BrainStorm Cell Therapeutics recognizes Elizabeth Fassler, who served in the U.S. Army as a Tactical Control Officer for a Patriot missile battery. 🇺🇸 @ElizabethFassl2 continues to serve others as a fierce advocate for the #ALS community by contributing to multiple committees, several of which focus on veteran-specific #ALS challenges. 💪🏻 Thank you for your service and relentless efforts to help #EndALS. ⚡️
#BetterTogether
C Lebovits 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. iamals.org/action/elizabeth-…
C Lebovits retweeted
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
C Lebovits retweeted
The 3rd Annual #ALS Drug Development Summit took place in Boston this week. Stacy Lindborg, PhD delivered a presentation on new #biomarker data from the NurOwn Expanded Access Program (EAP) along with data from the Phase 3 trial.
C Lebovits retweeted
Finally , accessible information on the #c9orf72 repeat expansion that speaks to the people impacted. Proud to share this well cited article: endthelegacy.org/c9orf72
C Lebovits retweeted
It's not uncommon to find 15, or even 50, different organizations dedicated to a single rare disease.
This is without a doubt holding the rare disease community back.
The reality is that compared to more common diseases, rare diseases already face significant hurdles in accessing resources. This scarcity is amplified by the fragmentation of groups.
Each organization, operating in isolation, struggles to gather sufficient patient data and biospecimens, which are crucial for advancing research and treatment options.
Imagine the potential if these groups could unite their efforts. By combining resources, sharing data, and collaborating on research, we could accelerate progress in ways that are currently out of reach.
How can we foster greater unity in the rare disease community? What steps can we take to ensure that every organization, family, and patient is part of a larger, more effective network? #MedTwitter
C Lebovits retweeted
Tonight, I want to share the incredible story that ran on @CBSSunday.
The story is both a reminder of how fragile life is and a reminder of how people can do the most extraordinary things.
Thank you for watching and for sharing.
Good night moon.
cbsnews.com/video/fighting-t…
