Tom Fitz 👨🏻‍💻💡🔌

The smarter you get the more you realize how little you know

Never ask a with #ALS "how are you doing?" unless you're ready for a loaded response lol

@LTCShop @GoldenCareUSA thank you

@_wobblewobble @GoldenCareUSA I'm sorry you've been dealt a very difficult hand.

I'm looking for a full-time #caregiver so Shannon can go back to work. I spoke to an advisor from @GoldenCareUSA who told me because I need care #LongTermCare #insurance companies will refuse coverage Long Term Care insurance rejects people that need care. That seems cruel to me

@LTCShop @GoldenCareUSA so we have to pay them to do nothing before they will provide the services they advertise. That seems backwards

@_wobblewobble @GoldenCareUSA Long-term care insurance is like other types of insurance: you have to own it before you need to make a claim.

the @NBA tries to spin @Money23Green being a dirty player into him being passionate but we know triple single needs to give cheap shots when he shoots 20% from beyond 6ft lol

I work a full time job using only my eyes. Nobody tell @realDonaldTrump though! #ALS #TobiiDynavox #EyeGaze

@MinoShah @FDACBER @VPrasadMDMPH @SecKennedy @DrMakaryFDA it appears to be only posturing. We are still overlooked and not treated with urgency. The only thing acting with urgency for us is #ALS

.@FDACBER @VPrasadMDMPH, you brought hope with your words, but did you mean what you said? 99 DAYS you've had our Nurown Citizens petition=SILENCE ALS=100% FATAL since 1869 @SecKennedy @DrMakaryFDA, Every day of delay=more HORRIFIC deaths WITHOUT HOPE. No words can convey how HORRIFIC the suffering is while we wait on the FDA GRANT ACCELERATED APPROVAL for NurOwn NOW. Our Citizens' Petition, submitted on July 3rd and now ignored for 99 days, demands it. This autologous stem cell therapy—our own cells engineered to flood our brains with life-saving neurotrophins—is ALS's FIRST BREAKTHROUGH in 156 years of hell. The Phase 3b trial was cleared in May 2025, and the data from the 2022 ADCOMM screams for approval. Irrefutable Evidence Biomarkers PROVE It Works: Reduced Neuroinflammation: Significant decrease in MCP-1 cytokines (p<0.05). Reduced Neurodegeneration: Significant drop in Neurofilament Light Chain (NfL) (p<0.05). Increased Neuroprotection: Massive surge in neuroprotective growth factors like GDNF/VEGF (p≤0.001). A total of 23 signals confirm target engagement. Real-World Survival SHATTERS Norms: The Expanded Access Program (EAP, n=10) shows 100% 5-YEAR survival without tracheostomies, compared to only 20% in the natural history of the disease (p=0.006). The median tracheostomy-free survival is extended to 7 YEARS (a 2-3x extension). Progression was halted for up to 17 months, and 85% of participants saw a SLOWED decline (ALSFRS-R: 0.15 pts/mo vs. natural freefall). Navy veteran Matt Bellina GAINED 6 points on the ALSFRS-R scale after 7 doses. The Case for Approval ALS Trials are Rigged Against Hope: Current trials suffer from small sample sizes (n=200), extreme patient heterogeneity, and the flawed ALSFRS-R endpoint. NurOwn has shown success despite these barriers. The TOFERSEN Precedent: Tofersen was approved based on an NfL drop alone for just 2% of the ALS population. NurOwn has demonstrated broader, better survival benefits supported by extensive real-world evidence. A conditional approval with a Phase 4 follow-up is the clear path forward. A Direct Appeal to FDA Leadership @MartyMakary: You have vowed to combine "gold standard science + common sense" to give rare disease warriors faster access. We are asking you to deliver on that promise for cell therapies. @RobertKennedyJr: Your crusade for stem cell therapies and your goal to end the FDA's "war" on them directly targets the crisis facing veterans and the underserved who are massacred by ALS. Thousands are dying during these delays. Fulfill your promise. Bureaucracy KILLS. Evidence SAVES. Read the petition: nurownworks.com/read-the-petit… Convene a meeting TODAY. Give us a fighting chance to LIVE. #BeyondSignsOfPromise #ApproveNurOwn #EndALS156Year @realDonaldTrump @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

@CraigReagan2 me too. Who gets to nominate these? Can patients have a say?

I pray this includes NurOwn (debamestocel)! #nurownworks

@CathyStandish happy birthday @bsw5020 !

This is a man I had the honor of meeting in DC years ago. His name is Brian Wallach. As the founder of I Am ALS, Brian advocates for legislation to END #ALS. The illness Brian bravely fights. Today is especially meaningful. Today is Brian’s birthday. In the ALS community, birthdays are a gift. Happy Birthday, Brian! Cheers! Thank you again for making the beer light shine. 🍺 #HappyBirthday @bsw5020 #SaturdayVibes @iamalsorg

@KickenALSAss is this a new thing? Our power chairs are as expensive as a new car

@_wobblewobble That was my experience on United also. The problem is that if they break your chair, they may not be required to pay for it like they used to.

I guess I will not be flying anywhere. US will not enforce Biden wheelchair passenger protection rule reuters.com/world/usdot-wi…

@limpbroozkit I have that same Uno ASL switch!

The return of Jeff

I still pray for a chance to live having #ALS. Whether it's a cure or change in regulation. Nothing has changed yet but I won't lose faith ever

@CathyStandish @US_FDA @NIH @iamalsorg so bills can get proposed then dropped and the ones that do get passed the @US_FDA will ignore. Sorry I'm just fed up with our reps

I’m the opposite. I love hugging my friends. I was always told I give the best hugs. But being touched is not the same as a mutual embrace. It’s very different now. I need a firm handshake in my life lol.

Today is 4 years since I was diagnosed with #ALS. I still have decent function in my right arm. I still work full time. I don’t know what makes me a slow progresser. I just thank God for that.

The sun doesn’t ask for permission to shine. Neither should you

@linds_kado @limpbroozkit Brooke is the GOAT of ALS lol

@limpbroozkit Coincidence that showing this kind of commitment and accomplishment is day 23?? Probably not 😉 MVP

Day 23 #alsawarenessmonth

@SeriousVein @iamalsorg It’s insulting to us how our advocacy groups STILL DENY NurOwn. First it was them saying no diff from placebo and PROs are lying and now they still deny after undeniable biomarker data! Wtf 🤬

@iamalsorg Wait, in 2019 you said "ALS is OVER" via a huge sign in Times Square. Is 800 views on Twitter how YOU do awareness in 2025? Yet you refuse to get behind our biggest (and only) hope - NurOwn, finding every reason possible to deny it a shot despite our pleas. Action huh.👏👏👏

#ALSisHere #SoAreWe How are you participating in our Day of Action today? How do you raise awareness of ALS in your daily life? Tell us in the comments! 👇

It is critical to the #ALS community that #NurOwn is included in thus listening tour because we don’t know what the next administration will do to @SecKennedy and @DrMakaryFDA and the necessary changes made to @FDACBER We must save #NurOwn now