Welcome to the Pompe Foundation of Northern Michigan

Pompe Foundation of Northern Michigan is organized exclusively for charitable, educational and scientific and purposes, and other purposes described in the Articles of Incorporation.

The purpose of this Organization is:

• To support education and encourage public awareness of related to Pompe Disease (or “Disease”);
• To further screening of the Disease;
• To advance scientific research related to the Disease;
• To support those with the Disease in obtaining treatment, with the first priority being given to those in Northern Michigan and more specifically those in Grand Traverse and Leelanau Counties;
• To restore not only the physical health, but also the mental and emotional health of those with the Disease and to provide support to they and their families;
• To provide encouragement and hope to those with the Disease, as well as their loved ones;
• To preserve and protect the dignity of those battling this devastating Disease.

Pompe disease is an inherited disorder caused by the buildup of a complex sugar called glycogen in thebody’s cells.  The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally.  Researchers have described three types of Pompe disease, which differ in severity and the age at which they appear. hese types are known as classic infantile-onset, non-classic infantile-onset, and late-onset. The classic form of infantile-onset Pompe disease begins within a few months of birth. Infants with this disorder typically experience muscle weakness (myopathy), poor muscle tone (hypotonia), an enlarged liver (hepatomegaly), and heart defects.  Affected infants may also fail to gain weight and grow at the expected rate (failure to thrive) and have breathing problems. If untreated, this form of Pompe disease leads to death from heart failure in the first year of life.