ALSsucks

JeanLaflamme

[ALSsucks @AlsKiss]

This is a great chapter from my all-time favorite book on #ALS. #inspiration #inspiration4 #books #MND #inspirational #inspirationalbooks #CaregiverAppreciationMonth #carer #caregivers #Caregiver

[Norman MacIsaac @NormanMacIsaac]

I'm sharing this chapter from my book to celebrate CAREGIVER APPRECIATION MONTH. This is my dewy-eyed ode to my caregiver, my muse, and my best friend.
https://t.co/gMOtNJH0Ts

#caregiverappreciationmonth #ALS #MND #inspiration #CARER #caregivers #Caregiver #communitycare #ENDALS

[Norman MacIsaac @NormanMacIsaac]

#ALS is a heterogeneous condition. Visit any ALS clinic & you’ll see. Why don’t @GovCanHealth & @PattyHajdu see that? It’s time to get treatments to patients so that we can identify the therapies together with clinicians. #Nurown works for many as do Radicava, #Tofersen & AMX0035

[Norman MacIsaac @NormanMacIsaac]

This is nice to read. If I inspired or entertained one more person today, I'm a happy man. If I didn't have to spend so much time ADVOCATING to #endALS, then maybe I could work more on my next book. Can you help me out, @GovCanHealth & @PattyHajdu? #priorityreviewforALS #ALS #MND

[ALSsucks @AlsKiss]

I just finished re-reading @NormanMacIsaac's book "The Best of the Worst News: Tales of Inspiration from around the World & My Life with ALS". This is hands down the BEST BOOK ON #ALS and it's helped me through my journey. #ENDALS. #MND #inspirational
https://t.co/QGRb0gGhyr

[Norman MacIsaac @NormanMacIsaac]

$BIIB has developed amazing treatments. #Tofersen works and the data prove that, with the exception of the flawed ALSFRS-R. Go, ATLAS, go! ;) @VPResearch_ALS @genge_angela @ALSCanada @SLA_ALS_Quebec #ENDALS #ALS #MND

[Norman MacIsaac @NormanMacIsaac]

After years of dialogue between the ALS community, Health Can 🇨🇦 & the ALS Caucus, we believed that we had a clear common understanding of the need to prioritize access to new ALS treatments. We view the decision to not grant priority review for Relyvrio (AMX-0035) as a BETRAYAL!

[Norman MacIsaac @NormanMacIsaac]

What are we going to do about this BETRAYAL of everything Health Canada misled us to believe about priority reviews of #ALS treatments? @HMcPhersonMP @Francis_Drouin @ToddDohertyMP @MHGaudreauBQ @ALSCanada @SLA_ALS_Quebec #EndALS We need action NOW!!!

[Norman MacIsaac @NormanMacIsaac]

The failure to grant priority review status to AMX-0035 (Relyvrio) was a betrayal of the #ALS community in Canada and internationally.#MND #EndALS #ALSbetrayal @ALSCanada @SLA_ALS_Quebec @SteveGMedia @ALSAction @MHudonsports @Francis_Drouin @HMcPhersonMP

https://t.co/eui6ml5xlL

[Norman MacIsaac @NormanMacIsaac]

Trahi par Santé Canada ... #ALSbetrayal #EndALS #ALS #SLA
https://t.co/fcO639jdhF

@MHGaudreauBQ @Francis_Drouin @SLA_ALS_Quebec @HudonGerant @JustinTrudeau @ALSCanada @LanthierChantal @Berard66 @JenicaAtwin @CarolHughesMP @DonDavies @HMcPhersonMP @SusanFK2 @MMacSeing @PattyHajdu

[Heather McPherson @HMcPhersonNDP]

The ALS community feel betrayed by the decision by Health Canada to deny priority review status to potential new #ALS treatments.

"The system is broken; and patients urge you to fix it. We don’t have time for anything less."
#EndALS

[Norman MacIsaac @NormanMacIsaac]

Join the #ALS wave. Share a photo of yourself holding a sign with this critical message! @ALSAction @ALSinOntario @lisagrono @Shines2017 @SLA_ALS_Quebec @Canal2Poulin @Life_Unrehearse @EmilieMac1 @YRWalk4ALS

[Norman MacIsaac @NormanMacIsaac]

@PattyHajdu @GovCanHealth @JustinTrudeau @HMcPhersonMP @ToddDohertyMP @Francis_Drouin @MHGaudreauBQ @JenicaAtwin @CarolHughesMP @JudySgroMP

[Norman MacIsaac @NormanMacIsaac]

Please invite pALS to post their photo with this simple ask and hashtag: #PriorityReviewforALS #ExamenprioritairepourlaSLA @ALS_AB @ALS_BC @ALSSocietySask @ALSmanitoba @ALSNB @CareAndHope @ALSAction @SLA_ALS_Quebec @ALSCanada

[Norman MacIsaac @NormanMacIsaac]

#PriorityReviewforALS
#ExamenprioritairepourlaSLA

SPREAD.THE.WORD: Grant priority review status to novel #ALS drugs. Now & until ALS is treatable not terminal. @HudonGerant @Berard66 @LanthierChantal @Claudcook @ALSCanada @ALSAction @SteveGMedia #EndALS @GregGowe @HMcPhersonMP

[Norman MacIsaac @NormanMacIsaac]

Why do we NEED #PriorityReviewforALS? Because we don’t have TIME. When will @GovCanHealth @PattyHajdu understand that?! #ALS #ENDALS #AMX0035 @Francis_Drouin @HMcPhersonMP @MHGaudreauBQ @ToddDohertyMP https://t.co/bibGLyGoyh

[Patrick Nelson @PatrickNelson2]

Health Canada denied a critical request to prioritize the review of a promising treatment for those suffering from ALS. During this delay - almost a third of Canadians with ALS will die. We need to do better. @ALSCanada #EndALS @GovCanHealth

[Tammy Moore @temerityTM]

People with ALS can’t wait for lengthy drug reviews and access negotiations - each day is loss - loss of function and loss of life. Canada must do better. @GovCanHealth @ALSCanada

[Susan FK @SusanFK2]

https://t.co/y9eMiv30hP

[ALSsucks @AlsKiss]

Why would you accept the @AmylyxPharma NDS if #AMX0035 cannot be an adjunctive therapy?? This makes NO SENSE @GovCanHealth @PattyHajdu. Is the #ALS Caucus looking into this? @Francis_Drouin @ToddDohertyMP @MHGaudreauBQ @ALSCanada @ALSAction #priorityreviewforALS #ENDALS

[Norman MacIsaac @NormanMacIsaac]

Are we in the #ALS Twilight Zone?? According to Health Canada, "available scientific data do not support the use of AMX-0035 as adjunctive therapy to existing treatments” (i.e. riluzole & Radicava) W.T.F. is @GovCanHealth talking about, @PattyHajdu? #priorityreviewforALS #ENDALS

[Norman MacIsaac @NormanMacIsaac]

I am so proud of my life partner & caregiver, Marie-Christine. In the words of Lou Gehrig, speaking at Yankee Stadium exactly 80 years ago to the day, “When you have a wife who has been a tower of strength and shown more courage than you dreamed existed-that's the finest I know.”