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Project Save Our Skin was founded by two parents of a child born with an unusual condition known as a collodian membrane (a thin, tight layer of skin covering the entire body). At birth, their child’s rare skin condition puzzled the doctors. After months of visits to specialists and testing, they learned that their child was born with a very rare genetic skin disorder called lamellar ichthyosis. The founders of Project SOS are very blessed that their child is in the category of less than 5 percent of affected children who show little or no visible signs of the disorder. Unfortunately, they are the exception, as ichthyosis is usually a devastating, disfiguring, and even debilitating disease. (More about ichthyosis) In their efforts to learn more about the disease they quickly realized how little information was available. Only one organization, The Foundation for Ichthyosis and Related Skin Types or FIRST, was dedicated to educating the public and affected families about ichthyosis. Even more troubling was the realization that there was little, if any, progress being made toward finding a cure. As they looked toward their child’s future, they saw little reason to hope that a cure was forthcoming. Certainly without a cure or effective treatment, decisions regarding potential children or grandchildren are extremely frightening for families. Due to the rarity (See incidence rates) of the disease there has been very little incentive for the private sector to invest in the research needed for a cure. Likewise, due to budget constraints there is very little, if any, federal funding for the necessary research. It became clear that the only way progress was going to be made was for those affected by this disease to lead the charge in fighting to cure ichthyosis. It was against this backdrop that Project Save Our Skin was formed. |
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