john@masscomp.UUCP (11/21/84)
We are parents of a young child who has congenital toxoplasmosis. In our efforts to find out about this disease and ensure proper treatment for our son, we have travelled down many blind alleys but we have also learned a lot. We would like to share what we have learned, and also to avoid blind alleys as we continue to learn. We believe that an organized approach would help us towards these goals, but so far as we can determine, there is no local, regional, or national organization that addresses the needs of families affected by toxoplasmosis. To address the problems that lie ahead of us and to help parents and children afflicted by this disease, we propose to start a parents' support group. The purpose of such a group would be to share experience, information, and strength among parents and children who have been victims of this disease. We would also like to incorporate a Toxoplasmosis Organization. It is our hope that such an organization might be an outgrowth of the parents group, in co-operation with friends and concerned professionals. We have read as much of the current medical literature on the disease as we have been able to find, and we have contacted most of researchers in the field by telephone. The researchers are unanimous in seeing the need for an organization such as we propose. We see a need for a Toxoplasmosis Organization because: Much more can be done to prevent the disease. By educating the public, we believe that we can help to save hundreds of children born each year from the lifelong consequences of Toxoplasmosis. There are several promising lines of research in both the treatment and the prevention of the disease. We hope to help bring the results of such research to light as soon as it is useful, and perhaps some day to help raise funds for such continued research. By working together we can make life more pleasant for families afflicted by toxoplasmosis. We would also like to work towards making the world more pleasant by one day eradicating this disease entirely. Please contact us if you have an interest in either a parents support group or a Toxoplasmosis Organization. If you know anyone who might be interested, please pass this information on to them. Your privacy will be respected. We offer whatever we can; your participation may be as much or as little as you desire. Betty Burton John Sundman (masscomp!john) 52 Edgell Street Gardner MA, 01440 617-632-7783 (Evening calls OK up til midnight).