We are delighted to announce that the first Drugs Trials for SMA in the UK likely to start within the year!
Following a meeting of the top clinicians from across Europe at ENMC in Holland on 11 -13th February it was agreed that the next step in our quest to find answers for Spinal Muscular Atrophy would be to perform a drugs trial using Valproic Acid (VPA) for all three types of childhood SMA. It is hoped that this trial will commence within the year.
The trials will be double blind placebo controlled and will be run in parallel across Europe including Great Britain.
This drug is not a cure - but it is hoped it may give functional improvement.
Anita Macaulay, Chief Executive of Jennifer Trust said ' whilst this drug is not a cure we hope it may lead to increased muscle strength in children and adults with SMA. We hope in the coming years that new drugs will go into trials that may give us the ultimate goal we seek. Meanwhile I am delighted that these trials will be co-ordinated across Europe and will include Great Britain!'
A letter has been mailed out to all families on the Jennifer Trust database today giving more information. The letter includes information on how families may get involved.
Anita Macaulay Chief Executive
Please Note
Patients will be recruited for the trials from the International SMA Patient Registry. Please sign up now if you haven't already or contact the office for more information.
Downloads
Please visit our downloads page for a copy of the letters sent to our families. |