Tag: Mirocals

Our response to 12th August MND Association Mirocals statement Where are the results? Why fixation on Iltoo product when trial drug already exists? Do commercial interests come before patients’ needs? While the MND Association’s (MNDA) recently found energy in pursuing pharma ILTOO for answers in its latest Mirocals update is welcome we must continue to…

Mirocals – a year of patient-led advocacy, but still no results With the 2024 summer holiday season upon us, we have just passed the first anniversary of our small patient advocacy group, united2endmnd, making the extremely difficult decision to raise publicly, the concerning situation with the extensive delay in publication of the publically funded Mirocals…

Mirocals results – the wait goes on… The June 24 MND Association update on Mirocals was welcome, because of the increasing urgency shown by our charity. It also served to confirm the My Name’5 Doddie Foundation’s hint in its June 6 statement that the ILTOO Managed Access Programme (MAP) might reach more patients than previously expected and…

We would like to thank the My Name’5 Doddie Foundation for their important statement today regarding the Managed Access Program (MAP) for ILT-101 from Pharma ILTOO.

In March, the United 2 End MND patient group sent Freedom of Information requests* to the 4 universities who were part of the Mirocals trial: Sussex University, King’s College London, Sheffield University and Queen Mary University of London. *note – charities are not covered by the Freedom of Information Act 2000 and so we were…

Is the Mirocals Consortium taking the fastest route for patients to access low-dose IL-2?  The Mirocals trial used a branded drug (Proleukin™️) that was already licensed and in use for cancer treatment. This should have meant the drug, if proven effective, would reach patients quickly, but sadly, we are faced with a continuing delay in…

Patients United ask MND Association & Mirocals Consortium to consider terminating ILTOO contract Last Friday, May 3rd, we asked the MND Association and professors involved with the Mirocals trial: Our message has been acknowledged, but as yet we have no substantive response. Neither, as far as we know, do the high profile patients. Our message,…

High profile patients ask Mirocals consortium for transparency – Add your voice? Last week our high profile patients (we hope they don’t mind being called that?), Stephen Darby, Rob Burrow, Marcus Stewart and Ed Slater along with their partners and Geoff Burrow wrote an open letter to the Mirocals consortium. Our community has responded with…