sarbacker

Father of 3 adult children. Global executive. pALS since 11.20. Founder of FB Group: ForKALS

[The ALS Association @alsassociation]

Exciting morning on Capitol Hill with #ALS advocates! We dropped off Ice Buckets for the 10th Anniversary of the Ice Bucket Challenge! 🧊💪 We challenge all members of Congress & their offices to join us in raising awareness & funding for ALS research!
#IceBucket10 #ALSAdvocacy

[Shah Minokadeh, M.D. @MinoShah]

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 fundraisers to give to #HealeyHope: https://t.co/VzQmMxQ0xd

Or support the expansion of their Expanded Access Programs: https://t.co/cEOMOfGuX5

The Healey Platform trial is now offering treatments in OVER 70 locations across the country, both providing access to MANY more patients & allowing MUCH FASTER enrollment/results for every treatment tested. #GameChanger

What orgs like #ALSTDI & #ProjectALS will NOT tell you is that your $$ are supporting preclinical research that will take MUCH longer than the lifespan of an ALS patient to reach YOU.

They will NOT tell you that the 1 treatment they developed has been acquired by a private company & the $$ donated have NO impact on the treatment getting into ALS bodies.

#AT1501 is owned by #EledonPharma & #Prosetin is owned by #ProjenX.

It's your right to choose research that will only benefit future generations of #ALS patients, but in my 12 years with ALS I have learned that NO organization will tell you the truth about their TRUE timeline despite your 2-5 year likely lifespan.

Lastly, please be aware that MANY companies with treatments ready to go into ALS bodies are applying to be added to the Healey Center Platform trial.

Let's stop kicking the can down the road & fight to #EndALS NOW.

PLEASE UNITE BEHIND #HealeyHope.

[sarbacker @sarbacker]

Hey @limpbroozkit Andrea and I were in Sydney, celebrating my third anniversary post Dx. We saw the @salesforce tower and thought of you. You have to get those guys to send it to Australia! Then we did this! 👇
#TechVsALS #EAP
#HealeyHope #NoWhiteFlags
#NotTodayALS

[sarbacker @sarbacker]

@kelsieswrites Beautiful remembrance. Chris was a true inspiration for how we pALS can continue to live and love. And I’m sure he felt very lucky to have such an amazing loving family, friends, and colleagues cheering him on throughout his journey. ❤️ 🙏

[sarbacker @sarbacker]

@SarahNauser Hey Sarah. You’re always welcome to come help cheer for the Phillies! 😃

[sarbacker @sarbacker]

@MinoSean Shah I’m here with you. Thank you for your resilience and persistence in fighting the good fight, And for your candid sharing of the tremendous awfulness that is the #ALS journey.

[sarbacker @sarbacker]

@a_life_derailed Does it work for 🍺 too? Making a mental note haha. 😃

[sarbacker @sarbacker]

@a_life_derailed I met my amazing Andrea online. Told her on the 4th date I had ALS ( she was tipped off by the port). We were married 15 months later. Be yourself, good luck finding your Andrea. #ALoveStory

[sarbacker @sarbacker]

@limpbroozkit Spot on Brooke! I feel the same in so many ways post-Dx. 🙏

[ALS ONE @alsone_official]

It's #ONEBostonDay and we're thinking of our hometown city and all of our runners who are participating in the #BAAK5 and the #BostonMarathon this weekend to #Run to make #ALSDONE. We love you all and are so beyond grateful! #EndALS

[sarbacker @sarbacker]

As your constituent & someone impacted by #ALS, I urge @senfettermanpa to support #ALSResearch. Add your name to the FY2024 ALS Appropriations Dear Colleague letter today: https://t.co/Uc2mLqCMTg #FundALSResearch

[sarbacker @sarbacker]

As your constituent & someone impacted by #ALS, I urge @senbobcasey to support #ALSResearch. Add your name to the FY2024 ALS Appropriations Dear Colleague letter today: https://t.co/Uc2mLqCMTg #FundALSResearch

[sarbacker @sarbacker]

What do you do 27 mos post ALS Dx? I skied Zermatt with my sweetie. Gotta say ALS arms lugging skis around was an adventure but we pulled it off!
@MeritCudkowicz @PaganoniMDPhD
@TechVsALS
#NotTodayALS #EAP #HealeyHope

[sarbacker @sarbacker]

@ByKaitHanson @TODAYshow @limpbroozkit Awesome Brooke keep building ALS mindshare. Felt like I got an “honorable mention” there as a corporate leader with ALS 🤔 😅 #TechVsALS

[sarbacker @sarbacker]

SuperBowl Singapore style 😃 Go Birds! 🦅

[sarbacker @sarbacker]

@Brink_Thinker Nothing else matters

[sarbacker @sarbacker]

@a_life_derailed Sorry Nate but I have to say I consider my minimal abstinence to be the key to my slow progression! 😂

[sarbacker @sarbacker]

@limpbroozkit Sqwheels

[sarbacker @sarbacker]

@limpbroozkit Nice! Top speed? 🦼💨

[sarbacker @sarbacker]

@SteveGleason My version:
Joy (Pump, pump, pump it up) and pain
(Come on, come on, here we go)
Like sunshine (What else? What else?) and rain
(Ah yeah, here we go)
Joy (Come on, come on, here we go) and pain
(Pump, pump, pump, pump it up)
Like sunshine (Yeah) and rain
Give it to 'em, Rob Base