SUPPORT
Internet Web Sites
- The UK based Lissencephaly Contact Group providing contact between families in and around the UK
- George Law’s Lissencephaly pages. (You’re already here!)
- Children with Micro Foundation – Aimed more a Microcephaly, they have extended their arms out to many of the *cephaly related diseases.
- The Parker Lee Project – dedicated to the memory of Parker Lee Reynolds. Parker’s mom Megan started the Parker Lee Project to help other special needs families who were in need to otherwise expensive medical equipment. They also take equipment donations to help pass along equipment that is no longer needed to those in need.
- “The Lissencephaly Network” at http://lissencephaly.org. This site has been defunct for quite a while but it still may appear in google results. Thanks to the fine folks over at the Internet Way Back Machine – Lissencephaly Network as of 2/28/2008. It looks like the site dropped off-line shortly after.
- Got another link you would like to see here? Please email us
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. | ||||||
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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 (andreamac007@gmail.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
Erin Beyers (erinbeyers@gmail.com) in New York
- 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
(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
- Lissencephaly Experiences – a Yahoo club.
Support Groups
- MUMS National Parent to Parent Network (US based).
- Contact A Family (UK based).
- Canadian Organisation for Rare Disorders (CORD).