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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. 

Stories and pictures of children with Lissencephaly.

	Isolated Lissencephaly Sequence (ILS)
	Katie, Cambridge, UK	Vincent, California
	Joshua, Pennsylvania	Ami, Japan
	Melanie, Austria	Corleen in New York
	Christopher, Indiana	Wyatt, Washington State
	Jérémie, France	Scottie, USA
	Alessandro, Rome, Italy	Declan, UK
	Mason, USA
	Miller-Dieker  Syndrome (MDS)
	Julia, New Jersey	Leticia, Brazil
	Ian, Australia
	Microsyndrome
	Kevin and Mary Ellen, St James, New York
	Lissencephaly with Cerebellar Hypoplasia (LCH)
	Joe, Montreal
	Polymicrogyria (PMG) - all types
	Shannon, California	Isaac, Jamaica
	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

KIDS PICTURE PAGES

Meet the stars of the show - pictures of Liss kids from over the world.

	Isolated Lissencephaly Sequence (ILS)
	Nahuel	Olivia	Euan and Katie	Ronnie
	Ilya	Ben	Cayse	Katie
	Megan	Gary	Daniel	Allie
		EmilyS	Michael
	Miller-Dieker Syndrome (MDS)
	Julia	Claudia	Zach and Julia	Christopher
	Polymicrogyria (PMG) - all types
	TeddyD	Shannon	Euan	Crystal
	Cody	Damian	Eiler	Jaclyn
			Olivia
	Lissencephaly with Cerebellar Hypoplasia (LCH)
		Joey	Willie	-
	Microlissencephaly (MLIS) & MSG
		Tyler Rose
	Walker-Warburg (WWS)/Muscle-Eye-Brain (MEB)
		Jenny1/2		-
	XLAG
		BJ

• The biggest single resource on the Web is The Lissencephaly Network site. This site is recommended as a good starting point for those who have just discovered Lissencephaly for the first time.
• The UK based Lissencephaly Contact Group providing contact between families in and around the UK
• George Law's Lissencephaly pages.

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

• Conference Memories - notes and pictures from the 1999 Get Together.
• Get-Together 2001 in Fort Wayne, Indiana.
• Get Together 2001 - pictures and notes
• Get-Together 2003 - Hauppauge, New York

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 (gingernut74@hotmail.com) 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.

• US Lissencephaly Network
• UK Lissencephaly Contact Group
• German Lissencephaly Support
• UK Lissencephaly Contact Group Family Day - (1999) - details..
• MUMS National Parent to Parent Network (US based).
• Contact A Family (UK based).
• Canadian Organisation for Rare Disorders (CORD).

RESEARCH

Visit the research institutes and discover who's who in Lissencephaly research.

• Research being carried out at The University of Chicago,  where you will find Drs Dobyns and Ledbetter working on the Molecular Genetic Studies of Cortical Development (The Lissencephaly Research Project). This site has the key contact Email addresses for the Doctors and other members of the Research Project.
• Research being carried out at the Baylor College of Medicine.
• Research at the Christopher A. Walsh Laboratory
• Comprehensive Brain Malformation Program - clinical program for children and adults with neuronal migration disorders including lissencephaly
• Do your own research!!!
  • Try PubMed for the latest in research papers.   Just enter  lissencephaly, polymicrogyria or whatever into the search box.
  • Try GeneCards: Good keywords are Lissencephaly, LIS1, DCX, Muscle-eye-brain disease

GENETICS AND CLINICAL

Both 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

• A list of Malformations of Cortical Development showing the large number of different conditions that can arise.
• Cephalic Disorders - all those disorders with names ending in 'cephaly'.

Other Information

• GeneClinics - a Lissencephaly and Subcortical Band Heterotopia (Agyria-Pachygyria-Band Spectrum) Overview by Dr Dobyns (includes polymicrogyria)
• The Lissencephaly Network's Genetics Page with recurrence rates for different types.
• The Lissencephaly Network's Lissencephaly Grades and Genetics.
• The Development of the Cerebral Cortex, a short paper on neuronal migration in Lissencephaly.
• Chromosomes made easy - a really good, simple explanation of genetics.
• Lissencephaly - brief overview from NINDS.
• KUMC -  contact information.
• SpecialChild article on Lissencephaly.
• New brain development protein discovered
• Thesis on brain development mechanisms

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.

• 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

• Double Cortex Syndrome research at the Christopher A. Walsh Lab.
• 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. -  the history of WWS from the OMIM.
• Muscle-Eye-Brain Disease (MEB) - from the OMIM.
• WWS research at the Christopher A. Walsh lab
• 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
• Perisylvian Polymicrogyria
• Patient Information Sheet on 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).
• Microcephaly
• Patient Information Sheet on Schizencephaly

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THE BRAIN

• Facts and figures about the brain
• Neuroscience for Kids - easy brain information!
• The building of the Cerebral Cortex, a technical description and an animation of neuronal migration.
• Neuronal Migration Video Clips from Rockefeller University.

Healthy Brain Images

• A whole host of brain images with descriptions from the Virtual Hospital.

Malformed Brain Images

• Example of MDS Type 1 (Agyria) MRI scan.
• Example of ILS Type 4a (Pachygyria) MRI scan.
• Example of Bilaterial Diffuse Polymicrogyria MRI scan
• Example of a Lissencephaly MRI (type unknown).
• Example of a Band Heterotopia MRI.

FEEDING

Many Liss kids have problems feeding. These links provide support and information on feeding.

• Feeding information pages covering oral-feeding development, issues surrounding tube feedings, diet and nutrition, and oral-motor development for feeding and speech.
• Up to date news and information on Gastronomy including diets, drug and images.
• Gastrostomy Tubes: Types, Care and Placement

ANTICONVULSANTS

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.

• A comprehensive Anticonvulsant list with trade names, applicable seizure types and onward links to additional information.
• Antiepileptic Drugs in Pædiatric Practice - doctors information.
• Anticonvulsants - list of side effects and other information.
• British National Formulary - UK doctors drug database
• Clonazepam
• Dilantin
• Klonopin
• Lamictal
• Valproic Acid (Depakene)
• Vigabatrin
• Dr Koops Drug Checker (Approved US drugs and drug names)
• Health Care Logisitics - specialist supplier of medical goods (pill crushers etc)

SEIZURES

Information on the different seizure types and other seizure related things..

• An index of Seizure Types
• An excellent Epilepsy Resource Page with many onward links covering all you would need to know about seizures.
• Frequently Asked Questions about the Ketogenic Diet
• Ketogenic Diet Discussion at Yahoo! Groups
• About Lennox-Gastaut syndrome
• About Status Epilepticus and it's treatment in the ER
• Vagus Nerve Stimulation for control of seizures.
• Infantile Spasms

FUN STUFF

Toys and software to provide stimulation, education and fun for kids with special needs.

• Special Needs Software from Laureate Learning.
• Special Needs Software from Inclusive Technology
• Special needs toys from the Dragonfly Toy Company.
• A downloadable, cause and effect PC game - BabyType (demo version available)
• Keyboard Pounder, a free cause and effect game for your PC.
• SENSwitcher - a suite of free programs designed to help teach people with profound and multiple learning difficulties
• A mailing list to find, sell, trade, or give away Toys and equipment for special needs children
• Special Learning, including picture cards to download and printout.
• Do To Learn - Special Tools For Learning
• Christmas is coming! (Toy suggestions)

EQUIPMENT

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.

• eBay - special needs stuff for sale
• Rifton - equipment for mobility, standing, sitting and hygene.
• R.E.A.L Design - special seating, wedges and other products.
• AdaptiveMall.Com - online shopping for children and young adults with special needs.
• Enabling Devices - talking switches, specialised equipment, toys and more.
• Inclusive Technology - switches, software, PC adaptions and more.
• Dynavox - communication devices.
• Mayer-Johnson - communication devices
• WheelchairJunkie.com.
• OTDirect - large list of special equipment suppliers (UK based)
• Tumbleforms - aids for physiotherapy and everyday life.

RELATED CONDITIONS

These links are for conditions that are sometimes associated with the different varieties of Lissencephaly.

• Scoliosis (curvature of the spine).
• Spasticity (stiff muscle) treatment with BOTOX
• A really good site on Constipation.
• Children with Agenesis of the Corpus Callosum (ACC).
• Kids with Schizencephaly - kids pictures, information and an excellent mailing list.
• On-line Microcephaly Support Group
• The Hydrocephalus Association and Shunts
• The Muscular Dystrophy Association
• The Micro & Anophthalmic Children's Society - eye disorders seen in WWS/MEB.
• Drooling/dribbling - information and treatment.
• Not so much a condition, more of a habit - self stimulation (Stereotypical behaviours) in our children
• What is cortical vision impairment?
• Reflux and aspiration pneumonia
• Pain management - useful for those who have switched over to hospice/comfort care or are having pain issues

THERAPY

Techniques and ideas for physiotherapy.

• Patterning / The Institute for the Achievement of Human Potential
• The Wilbarger approach - Brushing Technique
• The Vojta Concept - developmental assessment and physiotherapy.
• Treatment and Education of Autistic and related Communication handicapped CHildren (TEACCH)

• Conductive Education (CE) / Ability Camp

MISCELLANEOUS INFORMATION

• Welcome to Holland a short piece of writing about having a child with special needs.
• The Ten Commandments for Parents of Handicapped Children.

• Maria's Story - providing quality care for children with disabilities
• Poems - different songs, poems, or thoughts that have some special meaning
• Joey Eckberg's story
• Internet Resource for Special Children
• Caring for a Child with a neurological disorder
• East Coast Barbeque, August 2000 - pictures of liss families having fun!
• Assistance Programs - help available in your area.
• Exceptional Parent Magazine for parents with children and young adults with a disability or special needs.
• Special Child Magazine for parents and carers dealing with a special child.
• Life after Grief - written by the Janet, mother of Clint, who died of Lissencephaly.
• The Lissencephaly Book Shop in association with Amazon.com
• Special Needs Project - good books about disabilities.
• Genetic/Rare Conditions - a whole host of links to many different genetic conditions
• A potential cure for the future?  Stem cell therapy.
• Aaron's Tracheostomy Page explains what a trach is, the care involved, and lots of other useful info.
• About Cytomegalovirus (CMV).  Research about CMV and Lissencephaly. CMV US National Registry
• About Toxoplasmosis.
• Check percentiles for your baby here
• Preimplantation Genetic Diagnosis (Genetic Testing with IVF).

FEEDBACK

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This page is by Sally and Jon: Email us. Last Updated: 18 May 2008 07:55:41. (UK Time)