MRC

A story worth sharing: Twelve years ago, Brian joined my first presidential campaign. Two years ago, he was diagnosed with ALS and launched @iamalsorg to find a cure. Brian and Sandra wake up every day believing that we can win this fight—and that makes me hopeful, too.

Want to travel with your loved ones this year, but worried about the complications of travel with ALS? Join the Many Shades of ALS for Let's Talk About It on January 22nd, where they'll discuss the challenges and rewards of traveling with ALS. iamals.org/action/lets-ta…

1869- neurologist Jean-Martin Charcot 1st identified #ALS 1939- Lou Gehrig diagnosed with #ALS 1963- Stephen Hawking diagnosed with ALS 2024- ALS is still HORRIFIC & 100% FATAL, 155 years later. ALS is rapidly becoming more common with 1 in 300 people getting ALS in their lifetime & the incidence expected to increase 70% by 2040. With a CORRUPT & RIGID @US_FDA @FDACBER @DrCaliff_FDA denying approval of effective #ALS treatments, DO YOU LIKE YOU & YOUR LOVED ONE'S CHANCES of avoiding this horrific DEATH SENTENCE? #NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #YouCouldBeNext Don't wait for HORRIFIC #ALS to enter your life to ACT. Hold #FDA Commissioner CALIFF & his CORRUPT #FDA leadership accountable. @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @PattyMurray @SenatorDurbin @SenatorHassan @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepMariaSalazar @RepJenniffer @RepPaulTonko @RepJohnJoyce @Congressman_JVD @RepChrisPappas @RepGusBilirakis @neeratanden46 @michaelcburgess @SenMarkey

In @nytopinion “When someone is facing a terminal illness, what is the cost and benefit of hope, even hope for an outcome that might never be realized?” @danielalamasmd asks. nyti.ms/47bAcqf

@AXAMexico @AXAResponde que navegador debo usar para usar mi cuenta? Una vez que me identifico como cliente manda muchos errores y no puedo hacer mi solicitud de reembolso

@AXAMexico @AXAResponde que navegador debo usar para usar mi cuenta? Una vez que me identifico como cliente manda muchos errores y no puedo hacer mi solicitud de reembolso

~ If the FDA were explicitly accused of tampering, collusion and fraud in an Advisory Committee Meeting, it would deny, exonerate itself or even order a cease and desist . Unless it was all true. ✅ Or considered itself above the law. ✅ Oh, Peter, Peter. Allowing ALS deaths to be counted as treatment deaths. That alone makes you a lying, malevolent, two-faced ghoul of unprecedented gall. THE FDA IS OUR GREATEST SAFETY CONCERN. (ALS Association comes in second, led by a conniving Imelda Marcos wannabe.) @US_FDA @FDACBER @DrCaliff_FDA @cathymcmorris @alsassociation @ShereeWLWT @sarahkliff @ReedAbelson @berthacoombs @CitizenCohn @AHCJ PWALS please continue to demand an investigation through Energy & Commerce Commission, your own representatives and local press tip lines. Here again is a 1-page summary you can attach: drive.google.com/file/d/128xUWY… and here's the list of E&C & Health subcommittee reps: drive.google.com/file/d/1oaw1E4… And does ANYONE know the Patient Representative, "Andrew Buckley?" Nobody has responded. This character is a phantom...and clearly a plant.

#ATENCION 🚨‼️¡Se tambalea la fiscal Ernestina Godoy! Su ratificación está pendiendo de un hilo. A unas horas de ser discutido el tema en el pleno del Congreso de la Ciudad de México @Congreso_CdMex, a Morena todavía anoche le faltaban dos votos para darle otro periodo en el cargo. A pesar de que desde la Fiscalía CDMX @FiscaliaCDMX han apretado con mucha fuerza a adversarios y diputados opositores Ernestina Godoy @ErnestinaGodoy_ no ha logrado la mayoría. Abro hilo... 🧵 (1/8) La historia completa en mi columna del Heraldo de México @heraldodemexico 📰👇🪶 heraldodemexico.com.mx/opinion/2023/1…

Synapticure & our #MovementDisorder specialist, @DrJaimeMartin, are excited to announce that our #neurology clinic now sees patients in the #Huntingtons Disase community. Specialized patient-centric care from anywhere in the US! #EndHD #neurotwitter vist.ly/e55b

"Never underestimate the power of a small group of thoughtful, committed citizens to change the world. indeed, it's the only thing that ever has." ~ Margaret Mead Today we celebrate the #ALS community's massive accomplishment with the announcement of three EAP grants for: 🔹Prilenia's Pridopidine 🔹Clene's CNM-Au8 🔹RAPA's Tregs Special gratitude to Brian Wallach & Sandra Abrevaya who drafted the legislation & met repeatedly with Congress to convince them to introduce this bill & fund ALS research. Their testimony at the July 2021 hearing was a gamechanger in building support for the Act for ALS. Without their leadership, today's EAP grants would never have been possible. Thanks to the No More Excuses community on Facebook & @iamalsorg community who jointly led this effort to pass the #ACTforALS. Several people in the community were critical to this effort: 🔹Nicole Cimbura, I AM ALS Leg Team lead @nicolecimbura who pushed to create the #ALSCaucus & did 1000s of hours of work to get it passed 🔹Mayank & @Mayuri_Saxena who created the #Helpmayuri website to easily contact your Congresspeople 🔹Pat Dolan of @Team_Thriving whose maps helped us track who had sponsored 🔹Moe Nunez who was my "Wingman" setting up 100s of zoom calls & was unrelenting in getting calls scheduled when no one else could 🔹Mama Bears like @LorriCav @BridgetRebecca4 @klink52 @kks69okie @Smithstrongmom1 who did 100s of zoom calls fighting for their family ... and yours. 🔹Shelly Hoover @shellyhoover who was always there when we needed a veterans' perspective on the zooms 🔹Sandy Morris who convinced pharma & researchers that we needed to use EAPs The #ALS community made 1000s of phone calls, sent tens of thousands emails & participated in 100s of town halls & zooms. In the end, because of the strength of this community, this bill was one of the top 100 most co-sponsored bills in the last half century. Thanks to the bill's sponsors: @RepMikeQuigley, @ChrisCoons, @lisamurkowski and Jeff Fortenberry for standing up for the ALS community. Congressmen Quigley & Fortenberrry did a live zoom with us when the bill was introduced, explaining the bill and telling the community how important it was to make repeated contact was with their Congresspeople. They & their staff were committed to getting this bill passed. But I want to especially thank two members of Congress because many don't know the back stories. 1️⃣ ANNA ESHOO @RepAnnaEshoo listened to the pleas from her constituents -- reading every email she gets & she got 100s from @JamieRoseBerryy. As Chair of the Health subcommittee of @EnergyCommerce, she went to work fighting to get us a Congressional hearing with the FDA & NIH in July 2021. Without her leadership, this bill would not have made it out of subcommittee mark-ups nor gotten a vote in the full E&C committee. She asked: "Does anyone dare vote NO?" After that she spoke on the House Floor where we got a resounding 423-3 vote. 2️⃣ CHUCK SCHUMER It was close to Christmas & Congress wanted to go home. The bill was stalled in the Senate. We hadn't gotten a vote in the HELP committee even though we had 63 cosponsors -- a majority to pass. And 3 Senators were blocking the bill from getting a vote on the full Senate floor. With Mayank & @Mayuri_Saxena, we got on a zoom with Majority Leader @SenSchumer's Health staffer & implored them to get us a vote. They promised to call us back the next day. But before the next day, Senator Schumer called a UNANIMOUS CONSENT Vote, sending the bill to @POTUSBiden's desk for signing on December 21st. Leaders Lead. Both Anna Eshoo & Chuck Schumer made it happen for our #ALS community. As we celebrate these EAP grants today, let us remember this amazing community who often did this in the last months of their lives, many using eye gaze to participate, traveling to meet their Congresspeople in person. Today we also honor & remember those who #DiedWaiting. The list of people who died is too long to mention but people who did untold numbers of zoom calls with me includes: @becky_mourey, @JamieRoseBerryy, Jerry Manning, Matt Schotte, Jon Stewart, Julie Suarez, Lisa Mauriello, Becky Manzione, Ryan May, Brian Foderaro, Adam Crane, Betsy McCormick and of course, the incomparable @sandymorris333. #NeverForget the #ALSclock waits for no one. #EndALS