While some clinical trials for drugs to treat Motor Neurone Disease (MND) are commenced in the UK and EU many take place in the US. These clinical trials will go through different phases and if results from each consecutive phase demonstrate safety and efficacy the drug company will apply to the US Food and Drug Administration (FDA) for approval to market the drug.

For drugs that are in ongoing clinical trials and are yet to be approved by the FDA a delay in the US implies an even longer wait in the UK and EU. Such approval in the UK and EU may lag FDA approval by months or years. Therefore, early approval of lifesaving MND drugs in the US is in the interest of all MND sufferers around the world.

A letter is being sent from I AM ALS to FDA Commissioner, Dr Steve Hahn with the objective of achieving faster access to available treatments.

Please take a minute to sign the letter at the below link.

https://iamalsorg.typeform.com/to/n5XxZ2

[ iamals.org | @iamalsorg ]

MND Tweet-a-thon | MND Advocates Tweet For Early Access To Treatment

Optional Theme:  FACE UP TO ALS - [Before and After MND photos tweeted to Dr Steve Hahn]

In a novel approach to being heard and relaying a message to the FDA Commissioner, Dr Steve Hahn, MND advocates are taking to Twitter to impress upon Dr Hahn the urgency required when it comes to early access to existing lifesaving treatments currently in final phase 3 clinical trials.

This Saturday’s weekly Tweet-a-thon to Dr Steve Hahn has an optional theme of before and after photos being included in tweets to Dr Steve Hahn using the hashtag #tweet2defeatALS .

If you would like to participate in the Saturday Tweet-a-thons, details can be found below.

- Saturdays, 12 noon to 6pm EST (5pm to 11pm GMT)
- 1 or more hourly tweet
- Use no more than two hashtags including #tweet2defeatALS
- The other # may be #NurOwn or other hashtag (#MND)
- A personal message to Dr Steve Hahn, FDA Commissioner
- Other recipients include @BrainstormCell
- No retweets or duplicate messages
- No insults or swearing

Example Tweet:

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@SteveFDA @SteveHahnMD @BrainstormCell

Please work with the drug companies towards providing early access to ALS drugs/treatments. [ or any personal message ]

Optional for this Saturday:  Before and After photos of MND sufferers or in memory of loved ones.

#tweet2defeatALS #NurOwn

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For a UK version of the Tweet-a-thon on a different day of the week recipients might include the below listed.

@BorisJohnson @MattHancock @sallylight17 @mndassoc @DarbyRimmerMND @NICEComms @MHRAgovuk @neuroshef @kingsmnd @BrainstormCell @EuansCentre @AnneRowlClinic