@MinoShah Profile picture

Shah Minokadeh, M.D.

@MinoShah

Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS

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PLEASE support an org that provides hope for THIS ALS generation If an org is not putting #DrugsInBodies NOW, they will NOT reach you in time @MGHNeurology Healey Center is the CLEAR choice testing MANY treatments NOW that can result in a breakthrough AT ANY TIME Encourage…

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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 regulatory RIGIDITY for #ALS While cancer patients often have…


#ALS advocacy is nonexistent We're failing future generations of #ALS patients & their families. MANY more are being given this DEATH SENTENCE EVERY DAY 1st documented case of HIV 1959- treatable 1st documented case of ALS 1869-100% FATAL in 2024 HIV movement founder Larry…


If every American frustrated with the duopoly of our political system didn't view voting for third parties as a wasted vote, we might see a proliferation of political options. Refusing to choose between the lesser of two evils could be the catalyst for real change.…

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Definitely important What happened to the EXTREMELY critical #PromisingPathwayAct from @SenatorBraun & the #BENEFITact from @SenatorWicker Have we not learned from our failures? Can't @iamalsorg @andreaSgoodman work to prevent the next few #ALS generations from experiencing…

There are only a few days left of this Congressional session, and our Veterans with ALS can't wait another year for their care to improve. Write to your elected officials about the Elizabeth Dole bill today: iamals.org/legislation/el…



I contacted Fred Fisher several times to publicly support #Nurown approval for #ALS. His commitment to #ALS patients and his compassion were evident in his responses. He never mentioned that he was battling cancer. It's a great loss for the #ALS community and humanity in…

The ALS Network announces the passing of Fred Fisher, president emeritus. His tenacity helped 1000's of people by forging dynamic programs to advance research, advocacy and quality care services. @YourALSNetwork has established a tribute fund in his honor: ow.ly/M6ZY50TmlPK

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Shah Minokadeh, M.D. Reposted

Some people with ALS will disagree, but I believe that to have #ALS is to be alone. Particularly in the late stages of the disease. Immediately after diagnosis people fight for you, but slowly the numbers of people start to dwindle. I hope that you never experience the…


Shah Minokadeh, M.D. Reposted

52-year-old man says a new Parkinson's drug has changed his life as a video shows the before & after effects. Damien Gath became the first patient in East Midlands, England to try the new drug Produodopa. Gath was diagnosed with Parkinson's 12 years ago. The following videos…


#ALS steals so much, even the simple joy of reminiscing. Scrolling through old photos, I'm flooded with happiness... then crushing despair. Life before was vibrant, full of possibilities I never dreamed could vanish. EVERY DAY, many more are being given this DEATH SENTENCE, &…


The #ALS community would be grateful if you or your business could donate to @RobertOrdway Ride. #EndALS Please don't wait for HORRIFIC 100% FATAL #ALS to enter your life to support efforts to #EndALS. #IamALS #PromisingPathwayAct @SenatorBraun

When I was 18, my dad passed away in 2003 after a five-year battle with ALS, also known as Lou Gehrig’s Disease. I was left fatherless, but luckily, Dad instilled a framework of timeless values that taught me how to persevere through hard times and reject the victimhood…

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It's depressing to see @MTPA_US can charge $14,000 for every 28 days of a drug (edaravone) that has been in use since the 1980s. I don't think many #ALS neurologists or patients are convinced that it does anything. #HighwayRobbery


ACT-UP AIDS movement founder Larry Kramer: "How long does it take before you get angry and fight back?" HOW MANY MORE HAVE TO DIE before the @FDACBER & @DrCaliff_FDA treat 100% FATAL #ALS with the same urgency/flexibility as cancer treatments? #FDAfailedALS #NurownWorks

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Shah Minokadeh, M.D. Reposted

Hi everyone. I just had an appointment with @TobiiDynavox tech support & they showed me something that will really help reduce being stuck/frozen on the i-16 & i-13. This feature is set to off by default. Open the icon "Eye Tracking Settings " 1/

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Shah Minokadeh, M.D. Reposted

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…


Shah Minokadeh, M.D. Reposted

PLEASE support an org that provides hope for THIS ALS generation If an org is not putting #DrugsInBodies NOW, they will NOT reach you in time @MGHNeurology Healey Center is the CLEAR choice testing MANY treatments NOW that can result in a breakthrough AT ANY TIME Encourage…

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ALS is a thief that steals your body, your voice, and your independence. It isolates you in a prison of extreme suffering and brutal loneliness. May this cruel disease never touch your life or the lives of your loved ones. #EndALS @RepGuthrie @RepLarryBucshon @RepAnnaEshoo


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