Another treatment for SMA on the Horizon?
Continuing research into spinal muscular atrophy (SMA) uncovered another critical piece of information about the condition neurologists have sought for decades.
Do you need help with an EHCP?
Those dealing with EHCPs and needing help, guidance or advice these are the opening times of the SOS SEN helpline before they break for the Easter Holidays.
Cost of Living Grant
Yesterday Muscular Dystrophy UK launched a Cost of Living Grant for people living with muscle-wasting or weakening conditions.
ZOLGENSMA UPDATE
The pause in access to treatment with Zolgensma in children with type 1 SMA aged older than 12 completed months has been lifted.
Information about Apitegromab – The new treatment from Scholar rock
Recently the FDA designated Apitegromb for fast tracking as a treatment for SMA. We wanted to provide some additional information about this treatment, read on for more information and trial details.
New SMA Drug in phase 3 trials fast tracked
The US Food and Drug Administration (FDA) has granted Fast Track designation for Biohaven’s new anti-myostatin adnectin, taldefgrobep alfa, to treat spinal muscular atrophy (SMA).
Do you know about the Council for Disabled Children?
TreatSMA is signposting families to the Legal Handbook 3rd edition uploaded by the Council for Disabled Children.
UK SMA Patient Registry need your help
The UK SMA Patient Registry has asked TreatSMA to reach out to the community to help the research team at Columbia University, New York who are currently running a project focused on fatigue in SMA. The survey criteria is for eight…