Today I chaired the All-Party Parliamentary Group (APPG) on 22q11 Syndrome's AGM.
The APPG works to raise awareness of the genetic condition that is 22q11 Deletion Syndrome by working closely with the Max Appeal founded by Julie Wootton, who is one of my constituents. 22q11 is a condition present from birth that can cause a range of lifelong problems, including heart defects and learning difficulties, but many others may grow up without realising they have it.
This is my second year of chairing the group, and when Julie approached me to join the group in 2020 I didn’t have to think twice.
As I learnt more about 22q-11 what concerned me greatly was that this condition is the most common cause of congenital heart defects after Down's Syndrome, yet there is no prenatal screening, and the condition is little known or talked about outside of the medical fraternity.
The APPG’s aim is to raise awareness of the condition and to lobby the government for early screening to ensure it is part of the Government’s new-born screening programme.
There were several speakers at the AGM, including Mandy Sanderson who talked about the very real need for prenatal screening for the condition and genetic testing.
This was a well-attended AGM with MPs, peers, experts present. The work of the Max Appeal is crucial to this, and I would like to thank Julie for all her work.
There has been real progress and I am hopeful that better screening and better support will be forthcoming as we make the case to the government. I will continue to raise awareness and hope to ensure this matter is debated in parliament.