About the Lissencephaly Contact Group
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History

The Lissencephaly Contact Group was formed in September 1989 by Kathleen Wood.   Kathleen's son, Peter,  was  born with Lissencephaly.  In the mid 1980's, she found that very few people knew about Lissencephaly.   Coupled with lack of good diagnoses few people were aware that their disabled children may have had lissencephaly.   Initially there were a few families who were in contact with each other.   Finally in 1989, with the help of 'Contact a Family' and 'In Touch'  the contact group was established.

Who are we?

We are a collection of families who have a child with some form of Neuronal Migration Disorder.  There are presently about 170 families represented by The Group, mainly from the UK,  but also from Ireland, Australia, Canada, France, The Netherlands and Norway.

What do we do?

We provide an initial contact point for recently diagnosed families

We provide a quarterly newsletter which focuses on:

• the children, their condition, care and treatment;
• their families;
• news about research;
• up and coming events.

We periodically print names and addresses (which is purely optional) of members in the newsletter so that members may contact each other directly

We arrange periodic meetings where families can gather and meet experts in the field of Lissencephaly and Pædiatric care.

Our objectives

The Group is established to

• preserve and protect the health and promote the welfare of persons affected by Neuronal Migration Disorders (N.M.D's).
• to advance the education of affected families, the medical profession, the education profession, and the general public on the subject of Neuronal Migration Disorders.
• to promote research into Neuronal Migration Disorders and their management. To publish any useful results thereof and to support organisations promoting research into Neuronal Migration Disorders.
• to promote and facilitate communication between interested parties for mutual support and encouragement.

Membership

Membership is free, but we do ask that members donate whatever they can to help support the Group.  To contact us click here.   Families with affected children and professionals with an interest in N.M.D's are eligible to join the group.

And finally.....

We always like to hear from families with newly diagnosed children of any age - so please do Email, write or phone just whenever you would feel you like to.

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