Dear @SenatorBraun,
Thank you for having the courage to speak for those who can’t, to walk through this storm for those who are unable and for being a hero in this #ALS battle.
Thank you.
For caring enough to listen.
#Fortherecord#EndALS#nowhiteflags#SundayMorning ✌🏻
Where is the @alsassociation? Scary to think that the leading organization for ALS is completely disconnected from the people that they “support” and “advocate” for. It’s time to step up for ALS NOW!
@SteveFDA @SteveHahnMD
Ev'rybody's talking about
Efficacy, advocacy, eligibility,
ethically, morally, humanity,
decency, honesty, civility
This-acy, That-ity, a-c-cy, i-t-ty
All pALS are asking, is give #NurOwn a chance
...........Give us a chance
https://t.co/Gd2o6O1NQc
Brian is way nicer than I. Considering the number of people that have seen this letter, @bsw5020 has 40k followers alone, 11,010 signatures is an insult to me. It's no wonder in 2020 we still have no access to viable therapies. Come on people.
Thank you so much to @ZellnerLaw for her continued support, personally and of the entire ALS community. Awarenesses is a crucial element in our fight. She, and her many followers, represent conquering over adversity...that is our goal. Glad to have them in our fight.
talk into action. Because ALS patients don't have time to talk about how great it would be "if". They only have the time to make that "if" a reality. Everyone is ready to work with you. Everyone is ready to roll. So, let's go. (2)
the trend is...#surviveALS
how do those with #ALS survive...AWARENESS
awareness for what...#NurOwn
Saturday, 11th starting at noon est tweet to
@FDACommissioner@SteveFDA @SteveHahnMD
include above hashtags
TOGETHER, LET'S MAKE THIS A TREND
@NeurosenseT@fda@SteveFDA this time frame does not work for ALS, you have to know that 1000s are dying before you approve effective medicine this must change and fda must work with the ALS Clock!
I fell asleep for 20 minutes and had the most beautiful dream that I handed this letter to @SteveFDA on 1.15.20 while I’m DC with over 100,000 signatures and that within weeks we had worked out a deal to make expanded access to promising therapies real.
Last week by the numbers:
1. 8,653 people signed 👇 letter demanding a real pathway to promising treatments today.
2. 500 people donated $40,000 to help make 5 ALS treatments real in 2020 (https://t.co/KOeuzTiR1B)
3. ALL of this was grassroots and patient-led.#YourVoiceMatters
Our New Year's resolution?
Reach millions more with our #ALS fight. So we decided to launch our first national TV ad titled "Hope is Contagious."
2020 will be one of the biggest years yet in our fight against ALS.
Why? Because we have you by our side and hope in our corner.
@SteveFDA Steve Gleason is a pillar in the ALS community and a great humanitarian to all, what better way to honor him than to approve therapies that are effective for #als now! your turn to bat!
We live in a time of amazing promise in the fight against ALS, but for too many living with ALS now these breakthroughs may come too late.
We can change that. Sign this letter. Join us and make hope real today. #WeCan
https://t.co/DsgpDxxK7Y
We fight so that no one has to hear, "you have ALS, and there is nothing we can do for you."
We fight so that patients can lead in our race for cures.
We are ready to bring our fight further than ever before.
Sign this letter & help us make hope real.
https://t.co/Qrbm48ePKq
Injection of Virus-Delivered Gene Silencer Blocks ALS Degeneration, Saves Motor Function - https://t.co/7EkD2w0dd1 #ALSresearch https://t.co/3NYihDFJUL