The MLD family pages (the precursors to the MLD Foundation) were set up to help inform, assist and join together those who have some sort of current or past affiliation with Metachromatic Leukodystrophy (MLD). It is our personal desire that people all over the world will become more aware of MLD, its affects, and the hope as the researchers seek better treatment, and eventually a cure for this devastating condition.
MLD is rare enough that, to date, no network has been put together to bring MLD patients, their families & friends, and the medical community together. It is our dream that resources and relationships started here can be a start toward that goal
We are but lay people, touched by a condition that affects bodies and minds in ways that will haunt us forever. We were devastated and alone - no compilation of MLD information, no way to connect with others who had been down this path before. We pray that this will not be a journey repeated because of what started here.
We dedicate and donate these resources in memory of our daughter, , who in her ten short years with us touched not only our hearts, but touched and changed the hearts of dozens of other adults and children. Her oldest sister, , is also afflicted with MLD.
Dean & Teryn Suhr
West Linn, Oregon, USA