Compassion Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support





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Supporting Compassion for families, Awareness, Research, and Education.
 


Compassion Links

Quick jumps:


Also See:
Medical Links
Education Links

Other MLD-Focused Foundations

  • Bethany's Hope - Canadian Foundation supporting gene therapy based MLD research - sponsoring a lab in London, Ontario, Canada

  • MLD Support Association UK - A young UK-based organization helping with local UK resources and advice.

Leukodystrophy & Lysosomal Disease Focused Foundations

  • The Myelin Project - focused on accelerating the research on repair of the myelin damaged by the genetic diseases such as the leukodystrophies, and by acquired diseases such as multiple sclerosis.

  • Hunter's Hope - is focused on increasing the public awareness of Krabbe Disease and other Leukodystrophies, increasing the likelihood of early detection and treatment, newborn screening, and fund research efforts to identify new treatments, therapies, and a cure for Krabbe Disease and other lysosomal diseases.

  • Stennis Foundation - Sponsoring research for a cure for leukodystrophy, including MLD.

  • Australian Leukodystrophy Support Group - provides counseling, encouragement, support, resources, research and information leukodystrophy sufferers and their families.

  • Lysosomal Diseases Australia - a somewhat dated site with limited resources for families.

  • Lysosomal Diseases New Zealand - provides counseling, encouragement, support, resources, research and information leukodystrophy sufferers and their families in New Zealand.

  • Brianne's LEAP (Leukodystrophy Education and Awareness Project) of Hope - is dedicated to raising public awareness and funds for research into white matter diseases, otherwise known as the Leukodystrophies

  • teamgive - a Utah based organization raising funds for rare neurological disease research.

  • United Leukodystrophy Foundation (ULF) - is a general resource covering all leukodystrophies, with an emphasis on ALD.

Rare Diseases

  • Children's R.A.R.E. Disease Network - Creating greater public awareness for rare disease, while connecting, educating and empowering the millions of families and caregivers.

  • The Global Genes Project - Raising awareness for rare genetic disorders.

  • teamgive - a Utah based organization raising funds for rare neurological disease research.

Non-English Links

US Education/Schooling Policy

  • IDEA (IDEIA) Regulations - the 2004 Federal regulations on education for disable children. This document is 300+ pages long but some have found that printing the cover page and pages 253-259 and then bringing them to you child's IEP shows that you are willing to use the law to call for accountability.  The law is clear on your rights to participate in all decisions and how you may appeal decisions you do not like. See especially pages 23-31, 33!, 35, and 36.

Transportation Resources

  • Air Charity Network - providing free commerical and private air transportation for those in need
    1. NorthEast Region
    2. East
    3. SOARS ... AL, GA, MS, NC, SC, & TN
    4. SouthCentral
    5. SouthEast Region
    6. Central Region
    7. Western Region

  • Southwest Airlines Medical Transportation Grant Program - a list of facilities offering free SWA tickets for medical transportation


    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 - UK
    • 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

    Wish Organizations

    Grief Organizations

    • 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.

    Also See:
    Medical Links
    Education Links

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