Our Mission

Medical research doesn’t just happen. Something has to jump start it. There are basically three different paths to medical research. The first is private sector research, which is typically led by the pharmaceutical industry. In order for the private sector to justify the tremendous cost associated with the research, there has to be a large enough market for the cure to justify the expense. Because of the rarity of ichthyosis, there is very little economic incentive for the private market to conduct the research.

The second path is government-funded research. Although the National Institutes of Health are leaders in medical research, there simply are simply too many diseases and not enough funds to conduct thorough research on the more rare diseases such as lamellar ichthyosis.

The third path is the university route funded by grants from private donors. That is where we come in. Currently there are numerous scientists and researchers working on several different ichthyosis-related projects. Unfortunately, there are very few research grants available for ichthyosis and none specifically for lamellar ichthyosis.

Project SOS and FIRST are seeking to change that. In 2006, Project SOS, in partnership with F.I.R.S.T., awarded the initial $75,000.00 Project SOS/F.I.R.S.T. Lamellar Ichthosis Research Grant to Dr. Judith Fisher of the Centre Nationale de Genotypag in Evry, France for her project entitled "Genetic & Clinical Studies in Autosomal Recessive Congenital Ichthyoses Belonging to 12(R) -Lipoxygenase Pathway." The search for a cure has begun!   The Project SOS/F.I.R.S.T. Lamellar Ichthosis Research Grant is scheduled to annual grant funded with the annual proceeds from the fundraising efforts of Project SOS.

Finding a cure for ichthyosis will be a “long journey” but long journeys start with the first step. Luckily the first step has been taken. Already the responsible gene has been identified: the gene transglutaminase TGM1 is responsible for lamellar ichthyosis, one of the most severe forms of the disease. The recent successes of the Human Genome Project (HGP) have greatly expanded the opportunities for researchers around the world to begin in earnest the search for a real cure. In just the last few years genetic testing has become available to accurately diagnose affected persons. With the start of the FIRST/Project SOS Lamellar Research Grant, we will be giving researchers the means to take advantage of these wonderful new opportunities that exist due to recent breakthroughs in gene research. With your help we can now take the NEXT step. For a more detailed explanation see The Research Project.

For more information on the state of Ichthyosis Research see: Ichthyosis Research, by John McGrath.