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Review for MLD Foundation, West Linn, OR, USA

Rating: 5 stars  

My son has adult-onset MLD, the rarest form of this genetic disease. After struggling alone for four years with mis-diagnosis and no-one else in the UK to help us we finally found the MLD Foundation. They have given us unwavering support and help throughout our journey. Our son's MLD has been halted/slowed by a stem cell transplant from our carrier son. When we went through major traumas when the transplant broke down and knew that whenever we used the e-mail forum there would be somebody there to support us and offer kind thoughts and advice. As a parent of an adult, our story is somewhat different from other families. Our son is now 38 and 14 years post transplant. We still struggle and know that we have the MLD Foundation there to offer any support we may need. Without the MLD Foundation we would still be out there, feeling alone and lost. The MLD Foundation have given us valuable information on MLD helped us make our way through Scott's troubled life. We think the MLD Foundation deserves recognition for the way it helps new families through the first few traumatic months after diagnosis - one of the most difficult periodsTh. MLD Foundation is a "family" who care about us and our children.

I've personally experienced the results of this organization in...

Through the MLD Foundation I have met other families with MLD, MLD sufferers and professionals who care for MLD sufferes. All provide essential support and encouragement.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Client Served & Recieved support and guidance for our family.