Our Foundation

How We Started
 

In 2002, just before Erik Fletcher’s first birthday, he was diagnosed with MPS1. At that time children with MPS1 often died within a few years. Fortunately, treatments now available today saved Erik’s life and he is now nine years old and attending third grade at his local public school.

As one of over 6,000 rare or “orphan” diseases in the United States, money for MPS1 research is scarce and promising new treatments are often delayed because of a lack of funds. Sadly, because MPS1 is degenerative, the quality of life is diminished and the length of life is shortened while people with MPS1 wait for new treatments. MPS1 individuals often endure multiple surgical procedures, pain and disfigurement as the disease progresses. For example, Erik has endured thirteen different surgeries since he was born.

Inspired by Erik’s positive attitude and strong personality, despite all of the challenges he faces every day, his family formed the MPS1 Research Foundation in March 2010. The Foundation has started with “Erik’s Chance” symbolizing the chance for a longer and healthier life for those with MPS1. Learn More about Erik’s Chance

Who We Are

The MPS1 Research Foundation is a non-profit, tax-exempt public charity pursuant to Section 501 (c) (3). Our Federal Tax ID number is 27-2066831. The administrative expenses of the foundation are kept to an absolute minimum since the foundation is operated by a board of directors who receive no salary and other non-paid volunteers. All donations are fully tax-deductible. Learn More About Us

How You Can Help

We encourage you to take the time to explore this Website to learn more about MPS1 . You can help those suffering from this tragic disease by donating to support research into new treatments and an eventual cure.

We believe that people with MPS1 deserve a chance for a brighter future. Since we are an all-volunteer organization, in addition to donations, there are many different ways you can help, and we encourage you to contact us for additional information.