The Henry Umsted Foundation is specifically geared towards investing in programs that serve families and children with a rare terminal condition.

 

According to the National Organization for Rare Diseases (NORD), there are approximately 6,000 known rare "orphan diseases" that have an impact on the lives of nearly 25 million Americans.   Rare "orphan" diseases include such better-known diseases as Sickle Cell Anemia, Tay-Sachs, Canavan Disease, Fanconi's Anemia and Lou Gehrig's Disease (ALS). They also include obscure diseases such as Landau Kleffner Syndrome, Wilson's Disease, Hutchinson-Gilford Progeria, and Menkes Disease.

 

Parents, brothers and sisters of a child who is diagnosed with a rare life-threatening condition are confronted with shock and pain. Such grief has the potential to destroy individuals and families.  The stress and strain on families is enormous and often creates social, financial and emotional difficulties. Sometimes, the strain can cause fractures in the family framework. The Foundation strives to offer programs that can assist the family on this incredibly difficult journey.

 

By focusing on the quality of life for the whole family, The Henry Umsted Foundation will make a difference for these children, their parents and siblings