Check out our map to see if there's another Liss family near you! If you'd like to be added to our map please email us at firstname.lastname@example.org! We use this map to connect new families & for organizing our Regional gatherings.
SLEEP SAFE BED GIVEAWAY
We have a unique opportunity for one Lissencephaly family! Thanks to an anonymous donor we are able to provide a customizable sleep safe bed to a family in need. The bed must be under $10,000. In order to qualify you need:
A child with a Lissencephaly diagnosis
A USA shipping address
A denial from insurance or proof that your insurance does not cover beds as "Durable Medical Equiptment" you can find this info on the website or in your insurance packet
Entries must be in by 12/20/2019. You can enter here https://docs.google.com/forms/d/e/1FAIpQLSf9PI-9RnLS3qP02_YluO_oUTAxMwr62HvlTuk39bfsOHRgTg/viewform?usp=sf_link
We will draw a recipient on 12/21/19, the recipient will have 48 hours to respond. You must provide qualifying documentation and your bed order within those 48 hours, or we must move to the next person. So please have all of the information readily available for us.
Condolences package - This is a gift from us to a grieving lissencephaly family who loses their child. We hope to launch a sponsoring program for those of you who would like to help contribute to paying for the packages. The more sponsoring we get the more packages we are able to send to grieving families. We would eventually like this program to help aide families with funeral expenses. This program was started in memory of Landon Johnson.
Packet Of Hope - This will be available in paper and PDF form, we can mail them or email them to new Lissencephaly families. Each packet contains a sense of hope, it will contain photos and stories of individuals with lissencephaly. With this we hope to help guide new families through those rough days of diagnosis, and shed some light on what this life really is.
Lissencephaly Foundation Inc -Lissencephaly Nonprofit
Palmetto Harmony - CBD products
The Parker Lee Project
Delivering Fancy Inc - Gift boxes for moms
Embrace Life foundation
Lissencephaly informational website
Rare Diseases website
Lissencephaly specialist - Dr. Dobyns
Cephaly Convention/Family conferences
Parker Lee Project - Help with Help Help with Medical equipment
Embrace Life Foundation 501c3 - Help with Help with medical equiptment
Morgans Wonderland - Accessible theme park
Waterway babies Neck ring for swimming
James' Story Time
Coming Soon in 2020!
Resource packets &
New family packets!
Join James while he reads stories via his facebook page, he also takes special requests!
Welcome to Holland Poems
These words have helped many Special needs families through the diagnosis process & provided a sense of hope. I hope these will help you also.