April 2006 - this section is being reorganized and enhanced.
Other Support & Resources
- Project Linus - provide love, a sense of security, warmth and comfort to children through the gifts of new, homemade blankets and afghans, lovingly created by volunteer blanketeers. Several members of the MLD Family have reported very good things about Project Linus.
- The Oley Foundation - focused on tube feeding support &information
- Sammons-Preston - supplier of assisted living & disability products
- CLiMB - Children Living with Metabolic Diseases and Contact-A-Family - a UK charity providing support and advice to parents whatever the medical condition of their child
- Care of the Terminally Ill Child - Psychosocial Needs of the Dying Child
- Make-a-Wish Foundation - International wish granting organization for children.
- Starlight Children's Foundation - wish granting organization for children.
- Dream Come True - wish granting organization for children.
- Dream Foundation - wish granting organization for adults.
- The Dougy Center - A grief support organization for children. Use the "Quick Link" to find similar local support organizations for children in your community.
- Compassionate Friends - for adults that have lost a child. Many local chapters that meet regularly. Note that the reasons for loss are many in this organization - not just a terminal disease like MLD.
- Google Search - a list of other grief support organizations - no experience or endorsements implied.