Insurance doesn’t cover it and there is little state funding. 1 year is life or death for children with VWM.

To help families with VWM


  • Purchase necessary medical equipment not covered by insurance
  • Purchase specialty vans necessary to carry wheelchairs and support disabled children
  • Support the costs of adapting a home for wheelchair access
  • Support the travel for medical treatment
  • Support attendance at Leukodystrophy conferences so families can learn about the best options for their children


To support the only 2 research projects in the world looking into a cure for VWM disease

Thank you for your support!

*Link to pay pal or whatever accepted form of receivables