The Severe MTHFR Steering Committee will come together to provide advice on how best to support the needs of the Homocystinuria due to Severe MTHFR community.
1) Provide ideas to HCUNA on what would be helpful to the severe MTHFR community, e.g. through periodic calls with the executive director and other board members as needed
2) Act as an ambassador to new severe MTHFR families - providing them with information, tools, and advice
3) Review draft content and materials for new resources being developed by HCUNA and provide feedback
4) Help serve as or organize volunteers as needed for events such as the next Patient-Expert meeting (registration, t-shirts, goody bags, etc)