als

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  1. Marcus’ Story: “Maybe if we can explain the future, it will help someone create the future”

    Marcus was diagnosed with amyotrophic lateral sclerosis (ALS) in 2016. For the past four years he has been committed to raising awareness about the underfunded disease and the path to finding a cure.

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  2. Matt's story: I'm doing fine

    I’m lucky. It's been 4 years since the first MND symptoms, only my voice has been impacted.

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  3. David's story: Nothing to lose

    Two and a half years after his diagnosis, David found a medicine with off-label application for MND.

    david 2x

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  4. China approves edaravone for ALS

    Radicut/Radicava (edaravone), shown to slow the progression of ALS, is now approved for patients in China.

    China flag thumbs-uo hand gesture

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  5. Marc's story: A brief look at life with ALS in the US

    After 3 years of living with ALS, Marc found a new medicine on the other side of the world. 

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  6. Mark & Dee's story: For better, not worse

    With tears, laughter and hope, Mark and his family find their own way to cope with ALS.

    mark and dee 2x

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  7. Peter's story: Life goes on

    Diagnosed with ALS only 6 months ago, Peter went against the current to find more options to treat his disease.

    peter golfing close

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  8. Bakr's story: living with ALS in the UAE

    Still walking and talking after 4 years with ALS: we share Bakr's experience of living with a rare disease in the UAE to further his goal of creating awareness and to connect with other ALS patients.

    bakr and wife daad blue sides

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  9. FDA gives go-ahead for MN166 (ibudilast) to begin phase 2b/3 clinical trials

    Approval for next phase of clinical trials puts ALS patients one step closer to accessing new treatment shown to slow disease progression.

    FDA Ibudilast molecule and pills

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  10. Teresa's story: how ALS changed my life

    Teresa's husband was diagnosed with ALS. She spent 11 years as his caregiver and discusses her experiences.

    teresa: caregiver story

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  11. Anatoly's story

    I was looking for my friend, he has motor neuron disease (also known as amyotrophic lateral sclerosis - ALS) from working for Chernobyl nuclear station crash removal.

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  12. Bill's story

    When the US Food and Drug Administration announced in May 2017 that a new drug had been approved for the treatment of ALS, my father and I were thrilled.

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  13. Bernard's story

    Bernard is a successful entrepreneur. He's tall, well dressed, with salt and pepper hair and a wry grin. He loves his family and is a golf fanatic.

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  14. Garmt's story

    In July 2013, Garmt van Soest returned home from a week of kitesurfing, ready to get stuck into some new projects at work and prepare a wedding speech for one of his best friends, Paul.

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  15. Anatoly's Story

    This is Anatoly's own story of 'helping a hero'

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  16. Dealing with a Diagnosis

    Online counsellor Nicole Hind shares how to help our brains and bodies deal with a diagnosis.

    diagnosis dealing

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  17. Edaravone availability in the US - one month to go

    As we await the arrival of edaravone to US pharmacies, patients can access edaravone now through TheSocialMedwork.edaravone best price

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  18. Accessing edaravone in your country - the new FDA approved drug for ALS

    What are the results from the clinical studies that led to the approval of edaravone, and how can patients access it in their country?

    edaravone FDA ALS

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  19. If you have ALS

    If you are experiencing ALS too, this page was written specifically for you.

    Garmt van Soest

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