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 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. 

A key element of our existence is to provide forums to discuss the condition, and to share experiences and stories. A crucial part of that has become our Annual Children's Weekends, an excellent time to come together and meet one another; click here to read about the 2011 MGA Children's Weekend.

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

Click here for MGA booklet on the Congenital Myasthenic Syndromes!

Myasthenic Kids Brochure

Spring 2012

We are really pleased to announce that the new Myasthenic Kids Publicity Brochure is now printed, and available from the MGA Head Office in Derby, you can also download the PDF from here for your own printing, or distribution....

Thanks to all the wonderful children who star in it!

Download the Brochure here...

 

 

 

 

 

 

 

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.

To read the Sunday Express story on this from 5th September 2010, click here.