Keep Sam Smiling

@KeepSamSmiling

Mum to Sam aged 6 who suffers from Morquio Syndrome, campaigning for the first ever treatment called Vimizim to be funded by the NHS.

Otley, West Yorkshire, UK
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Tweets

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  1. retweeted
    Sep 3

    First day at high school and positive news about So proud and feeling a little relief

    3:26 AM - 3 Sep 2015 · Details
    12 retweets 8 favorites
  2. retweeted
    Sep 8

    pls support Katie Milby to flourish help fight to get access to £saved will only be spent in support & other costs!

    2 retweets 1 favorite
  3. retweeted
    Sep 8

    pls help Katie Milby (14) to flourish & fight to get access for £ saved = support! Help Scottish Morquio families live

    2 retweets 1 favorite
  4. retweeted
    Sep 8

    pls challenge the decision to stop the provision of help those with MPSIV it's rare e.g. Katie Milby (14) to flourish!

    2 retweets 1 favorite
  5. retweeted
    Sep 8

    pls support Katie Milby to flourish help fight to get access to £ saved will only be spent in support etc!

    2 retweets 1 favorite
  6. retweeted
    Sep 7

    pls help Scotland reverse the decision so they support MPSIV a rare disease, but this is assisted suicide

    11 retweets 4 favorites
  7. retweeted
    Sep 3

    Leeds Sufferers Of Rare Condition Get Positive News | Radio Aire - Number 1 for Leeds. Your Music, Your Life

    View summary Hide summary 5 retweets 1 favorite
  8. retweeted
    Sep 3

    Drug funding breakthrough hope for Otley boy Sam: THE PARENTS of Otley boy Sam Brown have hailed the "really p...

    View summary Hide summary 6 retweets 3 favorites
  9. retweeted
    Sep 3

    Family of Sam Brown, 6, from Otley who has Morquio have welcomed news that the drug he needs could now be funded by the NHS. More at 1330

    6 retweets 12 favorites
  10. retweeted
    Sep 3

    Just done interview with Radio Aire. For anyone in Yorkshire the good news regarding Vimizim should be on their hourly news this afternoon.

    4 retweets 3 favorites
  11. retweeted
    Sep 3

    . leaning towards approving 's drug but this isn't job done, so campaign continues!

    View summary Hide summary 10 retweets 6 favorites
  12. retweeted
    Sep 3

    More great news for .

    Health chiefs look set to approve the life-changing drug Vimizim, needed by 6 year old Sam Brown from Otley who has an ultra-rare disease.
    3 retweets 2 favorites
  13. retweeted
    Sep 2

    Health chiefs look set to approve the life-changing drug Vimizim, needed by 6 year old Sam Brown from Otley who has an ultra-rare disease.

    5 retweets 4 favorites
  14. retweeted
    Sep 2

    New hope for Otley boy with ultra rare disease. That and the rest of the day's news for on headlines at 6:10

    4 retweets 4 favorites
  15. retweeted
    Sep 2

    very proud of my wonderful friend Angela for keeping up the fight!!!

    View conversation Hide conversation 4 retweets 2 favorites
  16. retweeted
    Sep 2 Wales, United Kingdom

    Here is how the looks tomorrow:

    12:40 PM - 2 Sep 2015 · Details
    15 retweets 8 favorites
  17. retweeted
    Sep 2

    Finally - some hope for Morquio patients

    8 retweets 3 favorites
  18. retweeted
    Sep 2

    Relief as health bosses indicate ‘yes’ to Morquio drug

    2 retweets 2 favorites
  19. retweeted
    Sep 2

    NICE draft guidance conditionally recommends Vimizim for treatment of Morquio

    12 retweets 5 favorites
  20. retweeted
    Aug 29

    Please continue to RT & donate to help Sarah. Much appreciated.

    View summary Hide summary 3 retweets 1 favorite

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