On 2 January 2018 all mailboxes of TreatSMA were suspended by Google without warning. As a result, the TreatSMA team lost access to all emails, address books and shared documents which until then were hosted on Google’s G Suite service.
We contacted Google who claimed that there was a problem with our G Suite account years ago, which was unrelated to us and our use of it. Still, Google declined our repeasted requests to unblock the account or provide us with at least temporary access to our data.
We regret that such a large and socially conscious business as Google has resorted to such a deplorable move towards a non-profit community of people affected by a life-limiting genetic disorder who fight selflessly for life-saving medical treatments for us and our children.
Lack of access to our data and to the tools we used daily placed an additional and unnecessary burden on our efforts and paralysed our work.
We have now switched to a different email provider and re-created our mailboxes anew. We apologise for not replying to messages sent to us over the Christmas and New Year period. In all probability we won’t ever be able to read those messages, so thank you to resend them.
We have now learned to think twice before going for Google again.
—The TreatSMA co-ordination team
UPDATE 29/1/2018: Today Google offered to restore our email system for approximately 10 days so that we can back up our data.
UPDATE 25/2/2018: Unfortunately we were not able to save YouTube data and all our videos are no longer available at their old web addresses. They have now been re-uploaded to the new TreatSMA YouTube channel.