| _____ |
 |
_____ |
| _____ |
|
_____ |
Lissencephaly encompasses a range of severe development disorders that cause the brain to misdevelop during pregnancy. This page contains a whole load of links that are either directly about Lissencephaly or have some relevance. Bookmark this page as your Lissencephaly Launch Pad, a one stop starting point for Lissencephaly.
There are currently 295 links from this page. Last updated Jan 2010.
visitors since April 1999. Visit
Statistics
Kids Web Pages : Kids Pictures : Contact Groups and Support : Research : Genetics and Clinical : The Brain : Feeding : Anticonvulsants : Seizures : Fun Stuff : Equipment : Related Conditions : Therapy : Miscellaneous : Feedback : (Frame Off / On)
Stories and pictures of children with Lissencephaly.
|
Isolated Lissencephaly Sequence (ILS) |
|
|
| Vincent, California | |||
| Ami, Japan | |||
| Melanie, Austria | Corleen in New York | ||
| Christopher, Indiana | Wyatt, Washington State | ||
|
|
Scottie, USA | ||
 Alessandro,
Rome, Italy |
Declan,
UK Site 1, Site 2 |
||
|
Billee, Australia | |||
| Miller-Dieker Syndrome (MDS) | |||
| Ian, Australia | Leticia, Brazil | ||
| Microsyndrome | |||
| Kevin and Mary Ellen, St James, New York | |||
| Lissencephaly with Cerebellar Hypoplasia (LCH) | |||
| Joe, Montreal | |||
| Polymicrogyria (PMG) - all types | |||
| Shannon, California | Isaac, Canada | ||
| Steffie, Illinois | Kennedy, Ohio | ||
| Jaclyn, New York |
Matthew,
Vicksburg, MS |
||
| Walker-Warburg (WWS)/Muscle-Eye-Brain (MEB) | |||
| Chelsea & Jessica, Texas | |||
| Microlissencephaly (MLIS) & MSG | |||
| Joshua, Rhode Island | Coby, Florida | ||
Meet the stars of the show - pictures of Liss kids from over the world.
 |
Isolated Lissencephaly Sequence (ILS) |
|
|||
| Ben | |||||
| Gary | Daniel | ||||
|
|||||
Miller-Dieker Syndrome (MDS) |
|||||
| Claudia | Zach and Julia | Christopher | |||
Polymicrogyria (PMG) - all types |
|||||
| Shannon | Crystal | ||||
| Damian | Eiler | Jaclyn | |||
Lissencephaly with Cerebellar Hypoplasia (LCH) |
|||||
| Willie | - |
||||
Microlissencephaly (MLIS) & MSG |
|||||
| Tyler Rose | |||||
Walker-Warburg (WWS)/Muscle-Eye-Brain (MEB) |
|||||
| Jenny1/2 | - | ||||
| XLAG | |||||
| BJ | |||||
Internet Web Sites
Email Mailing Lists
Regular contact and support from others via Email. Want to know more about mailing lists? Click here.
| Lissencephaly | Polymicrogyria | WalkerWarburg | MillerDieker | Subcortical Band Heterotopia | Lissencephaly-Pro | LissAngels | ||||||
| A moderated list specifically for parents or relatives of children with any type of lissencephaly. | A moderated list for parents or relatives of children that have one of the many types of polymicrogyria. | A moderated list for parents or relatives of children that have Walker-Warburg Syndrome or Muscle-Eye-Brain disease. | An unmoderated list for Miller-Dieker syndrome | An unmoderated list for Subcortical Band Heterotopia | An unmoderated list open to anybody (friends, relatives, families, professionals etc) with an interest in Lissencephaly. | A moderated list for parents of children that have lost a child through Lissencephaly. | ||||||
|
|
|
 |
|
|
|
The Lissencephaly Network Get Togethers
Friendly Email Addresses
If you want to directly contact parents who have a child with Lissencephaly in your area via Email try:
Pacific Region
- Maria Bruckner (maria1@caboolture.starway.net.au) in Brisbane, Australia.
- Pete and Jill Smith (jpismith@bigpond.com) in Cranbourne East, Victoria, Aust.
- Peter and Glenda Molony (petermol@bigpond.com) in Melbourne, Australia.
- Annette Farmer (victoria2@ozemail.com.au) in Perth, Australia.
- Sharon Cooke (scooke35@hotmail.com) in New Zealand.
- Liz Walker (emwalker@xtra.co.nz) in New Zealand
- Andrea Mackereth (amackereth@yahoo.com) in Auckland, New Zealand
- Hellan & Andrew (andrewc@zip.com.au) in Australia
- Samara Wiseman (s.j.wiseman@optusnet.com.au) in Victoria, Australia
Europe
- Sally Abbott (syabbott@bigfoot.com) in Cambridge, England
- Angela Brown (a_m_brown_uk@yahoo.co.uk) in Stoke-on-Trent, England.
- Maria Taylor (mail@gltaylor.co.uk) in Cheam, Surrey, England.
- Amarantha Bourgeois (merlyn@wanadoo.fr) in Paris, France.
- Regina Cohen (cohen_m@mail.surfree.net.il) in Israel.
- Karin Engdahl (karin@it.lth.se) in Sweden.
North America
- Voula Agrapides-Sawa (vouvou773@aol.com) a speech pathologist who has worked with lissencephaly
- Valerie Boston (valerieb@pgtc.net) in Prairie Grove, Arkansas
- Leisel Jobity (mpg@caribsurf.com) in Barbados.
- Michelle Smith (mosha4@aol.com) in California.
- Mary Higgins (mhigs1@comcast.net) in San Rafael, California.
- Linda Furlotte (lfurlotte@mailcan.com) in Canada.
- Rina Okimawinew (Caniecia@hotmail.com) in Toronto, Canada
- Chantal Ledoux (dadoune70@yahoo.ca) in Quebec, Canada
- Kim Raub (raubb@javanet.com) in Connecticut.
- Cameron Cates (mc.cc@juno.com), Pensacola, Florida
- Tara Stiner (ptstiner@prodigy.net) in Florida.
- Brenda Delbridge (b_delbridge@Hotmail.com) in Elko, Nevada.
- Mary McDonald (angel4us@udnet.net) in Illinois.
- Susan Sivola, (ssivola@aol.com) New Hartford, Iowa.
- Carol Brenn (catylina71@aol.com) in Utica, upstate New York.
- Valerie MacDuff (valmac@rochester.rr.com) in Victor, New York.
- Sharon & Edward Flores (eflorestigger@aol.com) in New Jersey.
- Christine Wickman (crsmoogie@comcast.net) in southern New Jersey.
- Laurie Brink (lbrink1@maine.rr.com) in Maine.
- Nancy Farese (Nancymharris@hotmail.com) in Philadelphia.
- Patty Lockard (pattylockard@hotmail.com) in Tennessee.
- Kyle Smith (KyleKSmith@aol.com) in Tennessee.
- Tina Smith (gregtina@flash.net) in Houston, Texas.
- Brenda Savage (savage@consultant.com) in Lago Vista, Texas.
- Phyllis Miller (kpmiller@softhome.net) in Utah.
- Mike & Roxanne Ham (Hamiamm@aol.com), Vancouver, Wa
- Traci-Ann Felts (tracifelts@cs.com) in Pullyaup, Wa
South America
- Joaquim Manuel De Mendanha Arriscado (kimctb@hotmail.com) in Brazil
Africa
- Olaf Kirsten
(olafk@za.sappi.com) in Umkomaas, South Africa.
If you would like to be a contact on this list for your country, enter your details in the Feedback section.
On Line Chat
Support Groups
Visit the research institutes and discover who's who in Lissencephaly research.
Research at
the
Christopher A. Walsh
LaboratoryComprehensive
Brain Malformation Program - clinical program for children and adults with
neuronal migration disorders including lissencephalyBoth the clinical diagnoses and genetics of Lissencephaly are broad and complex. The links that follow give an insight into how complex a subject this is. Warning - most of this is technical - have a look at the Glossary for explanation of terms used.
General Information
Brain disorders
Other Information
Isolated Lissencephaly Sequence (ILS) and Miller-Dieker Syndrome (MDS)
A press release from the American Neurological Association on testing for hereditary variants of Lissencephaly.
Three genes & their effects on radial neural cell migration in the cerebral cortex.
Chromosome 17 abnormalities
Miller-Dieker Syndrome - the history of MDS from the OMIM.
- An image from a FISH test showing a translocation in Miller-Dieker Syndrome.
- LIS1 gene - technical details of the gene at the heart of ILS17 and MDS (click the Display button).
- Platelet Activating Factor, PAF - a subunit of the LIS1 gene from the OMIM.
- PAFAH1B1 Mutations that cause ILS/MDS (from Chromosome 17).
- LIS1 gene information.
- Observed abnormalities when the end of the short arm ('p' arm) of chromosome 17 is deleted.
Double Cortex & Subcortical Band Heterotopia - X Chromosome abnormalities
- DCX gene - the X chromosome gene that can cause Lissencephaly - from the OMIM.
- DCX Gene Mutations that cause ILS (from X Chromosome).
- X-Linked Lissencephaly - some background information from the OMIM.
- Double Cortex
Lissencephaly with Cerebellar Hypoplasia (LCH)
- New naming system to distinguish the subtle types of LCH
Walker-Warburg Syndrome (WWS) and Muscle-Eye-Brain (MEB) Disease
- Walker-Warburg Syndrome. - the history of WWS from the OMIM.
- Muscle-Eye-Brain Disease (MEB) - from the OMIM.
- MEB research in Finland.
- About Encephaloceles
Distinction between WWS and MEB
Polymicrogyria (PMG)
Check the Geneclinics link in the Genetics and Clinical section
- Biparietal Polymicrogyria - a short summary of findings.
A study into Bilateral Perisylvian Polymicrogyria with MRI images Bilateral Frontal Polymicrogyria
Others
FCMD Gene mutations that cause Fukuyama Congenital Muscular Dystrophy (from Chromosome 9).
- Fukuyama Congenital Muscular Dystrophy (FCMD) - findings from Japan.
- LIS2 gene - a pseudogene (not proven to cause Lissencephaly).
- Type III Lissencephaly - brief overview.
- Norman-Roberts Syndrome (Microlissencephaly with thick cortex).
General Brain Links
Healthy Brain Images
A whole host of brain images with descriptions from the Virtual Hospital.
Malformed Brain Images
Many Liss kids have problems feeding. These links provide support and information on feeding.
Seizures are common in Liss kids with around 90% suffering from one type of seizure or another during their lives. In many instances these seizures may be controlled with drugs. Follow these links for details.
Information on the different seizure types and other seizure related things..
Toys and software to provide stimulation, education and fun for kids with special needs.
This section needs some help at finding recommended sites which have equipment for helping children with Lissencephaly, such as bathing aids, wheelchairs, support equipment, physio stuff etc. If you know of any suitable links please let me know in the feedback section below.
These links are for conditions that are sometimes associated with the different varieties of Lissencephaly.
Techniques and ideas for physiotherapy.
My thanks to the folks on the Lissencephaly Mailing Lists for providing many of the URL's on this page.
This page is by Sally and Jon: Email us.
