Brettlehto

This drug is the one that shown to help some greatly. @katiecouric Please help!!

I pray that @SteveGleason will say the fact that NFL players are 4 times more likely than the general population to develop and die from 100% FATAL #ALS. They deserve to know the truth. Don't you think @nflcommish? #EndALS @ESPYS @ESPNNFL @espn @NFL @NFLAlumni @KerryGoode @timgreenbooks @OJBrigance @ChieSmith35 @TShawsTruth @TeamGleason @stevens_nation @BriganceBrigade

"ALS is a relentless journey. We’re diagnosed. We die. Quickly. We don’t have time to advocate. Every day is a fight for survival and it’s a fight we will all lose. All of us." #EndALS #ALS

1/ Have hope, pALS. Next month I will receive my 12th injection of #Qualsody-an #ALS drug the @fda admitted was potentially dangerous (and which failed its Phase 3 trial). This drug was approved for SOD1 ALS regardless of "minor" risks such as brain swelling, meningitis, (cont'd)

In ALS, motor neurons are dying. In this fascinating trial, researchers are using #neurotrophic factors to help rescue motor neurons. Dr Clive Svendsen of @CSRegenMedicine at @CedarsSinai is is using a protein called GDNF (glial cell line-derived neurotrophic factor), which is a "nutrient that brain cells can use to mature & survive. GDNF promotes the growth of axons, the threadlike structures brain cells use to communicate, and also helps damaged cells rejuvenate." But GDNF is a large protein that cannot pass through the blood brain barrier. So @CliveSvendsen's lab engineered a human #stemcell called a neural progenitor to release GDNF, then transplanted those cells into the spinal cords & brains of people with ALS. Their hope is that the progenitor cells will mature into healthy support cells & release #GDNF that will help HEAL diseased motor neurons. There are still openings in the early P1/2a trial focusing on upper motor neurons. Here is the link to learn more about trial eligibility: clinicaltrials.gov/study/NCT05306… #ALS #EndALS #stemcells

"ALS AWARENESS" by itself is USELESS! I had ALS during the #IceBucketChallenge… the ultimate "awareness" campaign. If you speak with healthy people who participated, very few know what ALS is & none have become ALS activists. 155 years of ALS being 100% FATAL, at what point will everyone realize that AGGRESSIVE ACTIVISM is needed? FFS A movie will do NOTHING to #EndALS . Seriously, #WakeUp!! Don't reward this nonsense with endless praise. There are ZERO effective leaders in #ALS today. Since ALS has NEVER had an aggressive leader, I want to show you one so you will know if one ever shows up.

1/ When tens of patients facing an #ALS death receive a clear result (backed by the strongest biomarker data ever), the @FDA and "advocates" with chips on their shoulders often make things ugly. Not sure what a "plop trial" is, but let's review: the last two @US_FDA #ALS drugs...

@ianmiles Fake. That dog was playing

This guy had it coming. He was warned. Don’t mess with people’s dogs when they tell you not to.

Once again we learn "stem cells don't work". Apparently 7/10 won't meet a "p-value" I'm guessing? Right @alsassociation @ALSTDI @ALSCanada @statnews @iamalsor @WSJopinion @mndassoc @ALSMNDAlliance @MNDScotland @MND_RIA? Damn, #ALS has ISSUES.

100% FATAL #ALS IS NOT RARE! You or your loved one could be next Each day is a battle against the relentless progression of the disease as we are denied effective #Nurown due to #PeterMarks @FDACBER @DrCaliff_FDA INFLEXIBILITY. While cancer patients often have access to promising therapies through expedited approval pathways, those with #ALS are left clinging to hope, our lives hanging in the balance, as the @US_FDA clings to outdated processes that delay access to potentially life-saving treatments. #FDAfailedALS #NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal ALS robs you of your strength, your voice, & your independence, leaving behind profound loneliness & emotional pain. As your body betrays you, your world shrinks, while your mind remains vibrant & witness to the destruction of your life. Don't wait for HORRIFIC 100% FATAL #ALS to enter your life to ACT. @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepDonBacon

BREAKING: Dying #ALS patients denied pre-#NurOwn AdCom FOIA requests for "18 to 24 MONTHS." #NME's first FOIA request took 8 DAYS. We are considering civil action, as is our right. Any comment @FDACBER @US_FDA @FDACommissioner? @DrWoodcockFDA @statnews @biospace. Is this in play?

Would be great to see some of the millions of Dollars in donations. Help @BrainstormCell get the new trial funded. Pretty sure, Matt Bellina could happen for many. @iamalsorg @andreaSgoodman @ALSunitedOhio @youralsnetwork @AmandaS49737509 !!! Let’s do it!!

The #ALS community is being DECIMATED. We've lost giants like @AdyBarkan, @PQuinnfortheWin, @DoddieWeir5, @PeteFrates3, and TODAY @Rob7Burrow. 💔 HOW MANY MORE LIVES WILL BE LOST before the CRUEL @FDACBER & @DrCaliff_FDA exercise flexibility for EFFECTIVE treatment #Nurown? #CaliffIsCorrupt #100PercentFatal #FDAfailedALS WHERE IS YOUR RAGE? Several days of thoughts & prayers are ALWAYS followed by a return to & acceptance of the status quo…… CERTAIN DEATH. THE TIME FOR THOUGHTS & PRAYERS IS OVER. WE MUST DEMAND ACTION if we want to ever see an end to #ALS. CONGRESS, dying ALS with broken bodies & NO BIG PHARMA ALLIES, NEED our elected officials to fight on our behalf. Don't wait for HORRIFIC #ALS to enter your life to hold the #FDACBER Director #PeterMarks & #DrCaliff ACCOUNTABLE for their inhumanity and corruption. @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @SenatorWicker @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepDonBacon

100% FATAL #ALS IS NOT RARE! You or your loved one could be next Each day is a battle against the relentless progression of the disease as we are denied effective #Nurown due to #PeterMarks @FDACBER @DrCaliff_FDA INFLEXIBILITY While cancer patients often have access to promising therapies through expedited approval pathways, those with #ALS are left clinging to hope, our lives hanging in the balance, as the #FDA clings to outdated processes that delay access to potentially life-saving treatments ALS robs you of your strength, your voice, & your independence, leaving behind profound loneliness & emotional pain. As your body betrays you, your world shrinks, while your mind remains vibrant & witness to the destruction of your life. I can't imagine anything worse. Don't wait for HORRIFIC 100% FATAL #ALS to enter your life to ACT. @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepDonBacon

New Neurofilament Light (#NfL) data from #NurOwn EAP once again proves NurOwn Works in 100% fatal #ALS. More Doses + More Time = Works More! ir.brainstorm-cell.com/2024-05-20-Bra… People on NurOwn in P3 + EAP: 🔹11% NfL decrease = avg in P3 who rcvd 3 doses 🔹4% NfL decrease = 10 on NurOwn in P3 who were chosen for EAP 🔹27% NfL decrease = P3 + EAP1 🔹36% NfL decrease = P3 + EAP1 + EAP2 People on Placebo in P3 + NurOwn in EAP: 🔹37% increase in NfL = P3 Placebo 🔹17% increase in NfL = EAP1 🔹5% decrease in NfL = EAP2 🔹P3 placebo crossover-like participants stabilized in EAP1 with slower NfL increase (as Dr. Windebank testified)... then in EAP2, they had decreases in NfL CSF Biomarker Data & NurOwn Dosing in P3 & EAP: 🔹13 CSF samples in P3 & EAP from 2017-2022 measuring neurodegeneration biomarker Neurofilament Light (NfL) 🔹Sample size of 8/10 completed EAP1 & 6/10 EAP2 🔹GAPS in treatment: ≈ 1-2 yr gap between P3 & EAP1 dose ≈ 6 month gap between EAP1 & EAP2 #NurOwnWorks... Our regulatory system doesn't. @DrCaliff_FDA @FDACBER @POTUS @neeratanden @SecBecerra @RepAnnaEshoo @RepSchakowsky @cathymcmorris @RepBarragan @REPLBR @RepAndyHarrisMD @RepBrianFitz @TomColeOK04 @RepGuthrie @rosadelauro @SenatorBraun @ChrisCoons @SenSchumer @SenAmyKlobuchar @SenatorWicker @SenJohnThune @ChuckGrassley @SenSanders @SenBillCassidy @SenMullin @SenatorLankford @SenGillibrand @SenAngusKing @ChrisMurphyCT #EndALS #ALSawarenessmonth #RareDisease #DrugsinBodies

@environment_go @AMAZlNGNATURE It’s hounds on a bay up

@AMAZlNGNATURE That would be a wolf called for the pack. The forest made the sound much different. I might be wrong though.

What is that sound coming from the forest? 😳

@RoyaltySparkles @AMAZlNGNATURE Definitely hounds baying something up on the ground

@AMAZlNGNATURE Would like to know

@I_Am_EDB @AMAZlNGNATURE Definitely hounds baying something up on the ground

@AMAZlNGNATURE Pack of wolves!

@Danee_nk @AMAZlNGNATURE Listening to their hounds baying up something and waiting for them to tree it

@AMAZlNGNATURE So, what are they still doing there??? 😒

@Lildingdingg @AMAZlNGNATURE Definitely hounds baying something up on the ground