Bob Forster

diagnosed with ALS 12/14
APPROVE NUROWN NOW
#approvenurown

[Bob Forster @BF31789]

@alsassociation I told you YEARS ago that Nurown helped and you ignored me and let thousands of pALS die.. how am I supposed to trust that you will share my perspective now?

[Scott Smith @ScottFightsALS]

Many persons with #ALS (#pALS) receive a strange byproduct known as #pseudobulbaraffect. It makes it difficult to control emotions.

This morning while holding my daughter Hope, my PBA was triggered. One little thought of “will I be there when she grows up?” And boom. I’m done.

[Jamie Smith @JamieLW8]

Scott and I have cried more in these last 6 months than our entire lives combined. ALS isn’t just a death sentence. It is a disease that tortures you every day emotionally and physically until the very end. No one deserves this. NO ONE.

#endALS #ALSAwarenessMonth #ALS

[Brian Wallach @bsw5020]

I am a member of the community and @alsassociation I would very much like to attend this meeting, particularly after reviewing your questionnaire. Can I please be added to the invite list.

[Bob Forster @BF31789]

@alsassociation @US_FDA My partner @JulieSylvestre8 has submitted a 3.5 min speech that she would like included in this meeting about my personal experience with ALS and Nurown. It is vitally important my perspective is shared as I have been waiting almost 6 years for access to continued treatment

[JamieRoseBerryy @JamieRoseBerryy]

@alsassociation @US_FDA I’d like to submit this photo for the record.

[Deb Paust @PaustDeb]

@alsassociation @US_FDA - Nothing about us without us!
- 60 minutes is not enough time!
- Include expert advocates and caregivers!
- Make this right!
- Get us right!

[Shah Minokadeh, M.D. @MinoShah]

FDA is killing #ALS patients with red tape bureaucracy. Congress, hold the #ALShearings & make the @US_FDA accountable now. #NoMoreDead

@PattyMurray @SenatorBurr @FrankPallone @cathymcmorris @DrWoodcockFDA @SecBecerra @RepAnnaEshoo @brettguthrie

[Lorri Cavaliere @LorriCav]

For those saying everyone in #ALS should work together, I'll work with @alsassociation when it:
▪ spends more $ on research than salaries
▪ provides EAP $ for #DrugsinBodies
▪ advocates for promising drugs like NurOwn
▪ prioritizes my 29 yr old daughter's life over lake homes

[Governor Mike Braun @GovBraun]

My #PromisingPathwayAct on its way to be introduced in the Senate. This bill will help ALS patients and those with fatal diseases get access to life-saving treatments. @iamalsorg @alsassociation @CoreyPolen @bsw5020

[lynda brininger @LyndaBrininger]

Well I read in my E mails today ALSa hopes to make ALS a livable and treatable disease by the year 2030 are you fucking kidding me how many more have to die there are treatments out there that are safe and do work so it’s time to start using them ALS patients can’t wait.

[Jeff Fortenberry @JeffFortenberry]

Persons suffering with #ALS can’t wait for government process problems. @US_FDA listen to the people! #DyingWaiting #ActforALS https://t.co/6ZuqJJxe3z

[No More Excuses ALS Watchdogs! @als_now]

@biospace The tide is changing. Many are admitting ALS has failed. #ALS

[No More Excuses ALS Watchdogs! @als_now]

@biospace It's literally come to this. Meeting with the @US_FDA , Dr. Woodcock telling dying #ALS patients face to face that if new ALS drugs were safe, and made "even small changes in the rate of disease progression" they'd be approved. THEY ARE NOT! Sadly, MANY here died since June 2019!

[BioSpace @biospace]

NurOwn: A study in the complexity of ALS trials

#clinicaltrials #therapeutics #ALS

https://t.co/9RdJGif2vf

[Lisa's Legacy for ALS @LisaLegacy4ALS]

Thank you @nicolecimbura for using your voice! #ALS community - can you do the same? Let's do what we can to help Lisa!! Pls write emails to [email protected], [email protected] and [email protected]. Open the floodgates.

#NoMoreALSwidows #tofersen4lisa #dyingwaiting

[Bob Forster @BF31789]

@WSJopinion I was in the trial with him and I also received one dose of Nurown with good results. I want access to potentially life saving treatments for myself and all those living with ALS today

[Wall Street Journal Opinion @WSJopinion]

My husband and I fought for continued access to treatment and to improve an archaic regulatory pathway. He died waiting for change, writes Nicole Cimbura https://t.co/ZY6nG9KIFn

[Bob Forster @BF31789]

@MaryKayTurner1 what about phase 2b clinical trial participants? I've been waiting over 5 years for a second dose