Research, Assitance and Service
The Foundation Has Three Principal Goals
Marisol suffered from a form of leukodystrophy known as “CACH” (Childhood Ataxia with Central Nervous System Hypomyelination, also known as “Vanishing White Matter Disease”). The United Leukodystrophy Foundation writes this about the cause of Marisol’s disorder: “CACH is caused by mutations in one of the five genes that are collectively called eIF2B, or eukaryotic initiation factor 2B. This gene is necessary to properly make proteins in the body. The gene is so important that no one can be born with a complete absence of this gene. CACH is caused by changes in these genes that reduce the function of eIF2B. This reduction in function becomes a particular problem during episodes of fever, infection, or head traumas, and deterioration accelerates following such episodes”. As a result of this process, the brain’s myelin, which acts as the insulation around the brain’s nerve cells, is adversely affected.
Over the past six years, we have come to know and bear witness to the heroic and selfless dedication of medical professionals around the world. We are indebted to them for the support and hope they provide to families of children with neurological disorders.
A group of dedicated researchers has been working to find a cure for this disorder. These teams are located in a variety of institutions around the world. For 2009, we will focus the efforts of The Foundation For Marisol’s Journey on the work of Dr. Orna Elroy-Stein and her team at Tel Aviv University in Israel.
We feel a special connection to Dr. Elroy-Stein and her team. Since 2005, they have utilized Marisol’s DNA pattern to create mice that can be studied to help unlock the mystery of CACH. In honor of Marisol, the team has called this study group “Marisol’s Mice”. We are determined to help Dr. Elroy-Stein and her team find a cure for this difficult disease.
Marisol was born in Guatemala, so the Foundation has aligned itself to support Mil Milagros, Inc., in its mission to assist the poverty-stricken children of rural Guatemala. Mil Milagros partners with schools and families in Guatemala to improve the nutrition, health, education and life prospects for children from impoverished, predominantly Mayan families in the Guatemalan Highlands.
The organization’s goal is that all children in Guatemala graduate from sixth grade healthy and able to read. Only 30% of children in Guatemala currently graduate and up to 80% of Mayan children suffer from chronic malnutrition — the sixth highest rate in the world. By feeding the children, Mil Milagros and the Foundation are working to ensure that they complete primary school.
Marisol taught us to love others unconditionally. The most effective way to honor her love for us is for us to love others. Service is love in action. So the Foundation will dedicate resources to assist families with children with neurological disorders, or the caregivers who are dedicated to these beautiful children. Our experience with Marisol has provided us with a unique perspective, and strong affection for these special families. We are committed to offering them care and compassion.