Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
Should ALD be included as part of the newborn screening programme? Are you a man aged 16 and over affected by ALD/AMN? Or their family member/carer? Complete our survey and let us know your thoughts about ALD being included as part of the newborn screening programme: https://www.screenourboys.org/post/newborn-screening-study The deadline to complete the survey is the end of Monday 11th July 2022.
Opening first clinical study to treat patients The FDA have cleared the Investigational New Drug application for SBT101, SwanBio Therapeutics gene therapy candidate for AMN. This means that they are able to proceed towards opening their first clinical study to treat patients with AMN with SBT101 at sites in the US.
On our 2nd Day of Christmas, Nick Divall tells us about his diagnosis of AMN and his love of Christmas. Up until 2017, I had never been ill or diagnosed with more than low blood pressure. It was while on holiday in America that I first noticed walking problems. My left leg was doing an excellent job of tripping me up, all by itself. I put it down to being on holiday and the excitement of attending a Star Wars convention.
