Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Ten Minute Motion Bill in Westminster for 22q11 Syndrome, on Tuesday 5th June, 2018.

Image: raising_private_members_bill_247850544_medium.jpgWe were all thrilled at Max Appeal when we heard David Duguid MP, Chair of the 22q11 All Party Parliamentary Group (APPG) had secured time in the parliamentary timetable to raise a Private Members Bill on 22q11 Syndrome.

The aim is to include 22q11 in the genetic conditions tested for in the 'new born infant screening blood spot test' for all babies at five days old. He also the Department of Health to conduct a review and publish a strategy for 22q11.

If you have not yet seen his speech, you can view it here

Share the link with as many family and friends as possible to help raise awareness of 22q11.

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The date for the next meeting of the 22q11 APPG is on Tuesday 26th June, between 3.00 - 5.00pm at Westminster, where we hope to move forward with the preparations required for the second reading of the Bill on 26th October, 2018.

What can members do to support this work?

Please contact your own MP and ask them to support David Duguid MP's Bill on 22q11 Syndrome and join the 22q11 APPG. Further details are on the Max Appeal website and an example of a letter which you can adjust to meet your requirements when writing to your MP.

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