myasthenickids.org

Bringing families with myasthenia together

Myasthenia (noun): Abnormal muscular weakness and fatigue 

Myasthenic (adjective): Person with a myasthenia

Welcome to myasthenickids.org – the support network for myasthenic children, young people and their families.

This website is being developed by a group of parents of children with either Congenital Myasthenic Syndrome, Myasthenia Gravis or Lambert-Eaton Myasthenic Syndrome, with support from Contact a Family and the Myasthenia Gravis Association. 

Much of the site is still in development, however, please click here to read about the 2009 MGA Children's Weekend, where families got together for the first time to discuss how myasthenia affects children.

If you wish to contact us please email info@myasthenickids.org

Click here for new MGA booklet on the Congenital Myasthenic Syndromes!

3,4 DAP / Firdapse®

A number of CMS patients and families with children who use 3,4 DAP have been concerned over recent changes to both the supply and branding of this drug.

To download a factsheet issued by the Myasthenia Gravis Association on 30 July 2010, click here.

To view a report on the issue from the NHS North East Advisory Group, click here.