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Support & Resources

Please join our support groups to connect with families and medical experts. 

How can Cure MLD help?


Resource Guides

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.  

Image by Kira auf der Heide

Care Packages

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

Image by Chris Leipelt

Travel Grants

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).

Image by Austin Distel

Online Webinars

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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Support & Guidance

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



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.

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Emergency Grants

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.

Image by Jaron Nix


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

Fundraising Opportunities

Training Sessions

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

We are here to help!

What is the Cure MLD/Ambassador Program?

Because the first weeks and months after the news of an MLD diagnosis are particularly challenging, we have created the Ambassador Program to support families.


You do not need to travel, the Ambassador Outreach Coordinator will contact you, listen to your concerns, answer questions, and help you and your family on this journey. 


The Ambassador Program offers a variety of services:


  • Care packages

  • Medical resources and information about clinical trials

  • Specialists' guidance on how to manage home-based care

  • Webinars

  • Online support groups

  • Emotional support for caregivers, siblings, and patients

  • Grant programs to assist with accessing care for your MLD loved one

  • (For US families) Information about Medicaid, SSI, Make A Wish, and IEPs


Need help? Please ask

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