Support & Resources

We provide free copies of Living with Leukodystrophy (a medical resource guide), Loie's Disease (a children's book explaining leukodystrophy for educators, parents, and children), and Fixing Genes, Treating Disease (a children's book explaining gene therapy) to MLD families.  

We provide care packages for newly diagnosed families and families facing extended hospitalizations. 

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We provide travel grants for families seeking treatment in the US and abroad. ($500 for local travel and $1000 per affected child for international travel).

We host online webinars with leading clinicians and researchers. In December, we will launch a webinar series with Margaret Stanvcavage, RN on how to manage care in "the home hospital" as part of our "Caring for the Caregiver" series.  

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We provide support and guidance for families dealing with Medicaid and IEPs.

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We want to help you become a champion for your MLD loved one and inspire you to become an advocate for improved care, newborn screening, awareness and research.

We provide emergency grants for families in need. Grants are provided on a one-time basis and range from $500 or more based on the documented need.  Such funds may not be used for home renovation projects.

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We provide advice and guidance for families participating in clinical trials and help facilitate access to medical experts.  

We will host training sessions on successful fundraising strategies for your family and or the MLD community at large.  

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