I AM ALSOvjeren akaunt

@iamalsorg

I AM ALS is a patient-led, patient-centric movement ready to lead the fight for a cure.

Vrijeme pridruživanja: studeni 2018.

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  1. Prikvačeni tweet
    3. velj

    This past year we set out to change the world. We set out to make real treatments and cures. This year will be no different. ALS does not take a break, so neither will we.

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  2. Never question if your voice matters. More than 15,000 members of this community were heard today as we met with and handed him this letter: Thank you for the difference you are making in this fight. Thank you for helping us change the world.

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  3. 4. velj

    This is what fighting for the life of the people you love looks like. It takes guts and vulnerability. A determination to keep pushing and change a system that's not working for you. Together we must make that change real and give ALS patients a fighting chance.

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  4. 3. velj

    We are so grateful to have the support of an organization like . It is filled with compassionate individuals who understand that in order to reimagine a broken system you first have to empower the people it may not be serving.

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  5. 30. sij

    We will work like mad to make real any opportunity that makes ALS trials more patient-centered, provides access to therapies after trial participation, ensures trials live up to the promise of the new FDA guidance and provides a real pathway to access investigational therapies.

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  6. 30. sij

    When we said this last year, we meant it -- "There is a time when you must stand up and demand change and then work like mad with anyone who is willing to champion your mission to get that change to happen. That time is now in ALS."

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  7. 30. sij

    Legislative Priority 3. Pass the SSDI bill to eliminate the waiting period for ALS patients and their families to receive social security disability benefits.

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  8. 30. sij

    Legislative Priority 2. Make real a funded expanded access program for ALS- providing people living with the disease a pathway to access safe, potentially life-changing therapies ahead of FDA approval.

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  9. 30. sij

    Legislative Priority 1. Double congressional funding for DOD ALS research from 20 to 40 million and increase NIH ALS research spending by 20 million.

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  10. 30. sij

    This year our legislative priorities will be as aggressive as ALS is...

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  11. 29. sij

    We spent this past year working to understand the needs of people affected by ALS before we stand up a program dedicated to servicing those same needs. Read our findings here:

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  12. 29. sij

    Have you met our amazing director of navigation leading this program? Click here to learn more about her and how we hope to understand and respond to the needs of patients, their families and caregivers:

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  13. 29. sij

    Did we mention that we also now have an online store with all proceeds going directly to the navigation program? Click here to start buying I AM ALS swag for you and all your friends -

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  14. 28. sij

    Our commitment to you this year... By May 2020 we will launch a comprehensive navigation program servicing patients and their families through every step of the journey.

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  15. 27. sij

    When we took over Times Square with hundreds of advocates in person and thousands online. When we shared with so many more that together we can change the world for the people we love and unlock .

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  16. 27. sij

    When shared our story. And we reached millions more because of incredible partners like , , , , , and having the courage to shine a light on our fight.

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  17. 24. sij

    It's . So this is for every person battling : You are amazing. You are courageous, resilient and do so much to inspire us every day. You are making a tremendous difference in this fight. Simply put, you are changing the world.

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  18. proslijedio/la je Tweet
    24. sij

    I thought I knew the story, but this is truly inspirational. A real profile in audaciousness! In the best sense.

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  19. proslijedio/la je Tweet

    Former Obama staffer Brian Wallach was handed a terminal diagnosis in 2017. Today, he and his wife, Sandra, are working to change the final chapter for ALS patients.

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  20. 24. sij

    "It’s time to switch ALS conversations from a diagnosis rooted in darkness to the faces of people bravely moving forward." Thank you and for doing just that and boldly telling , and this community's story.

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