About Us

The mission of the SMS Research Foundation is to advance scientific research leading to innovative treatment options for people living with Smith-Magenis Syndrome.

History

The Smith-Magenis Research Foundation, a 501(c)(3) nonprofit organization, was founded in June 2010. The two founders, Missy Longman and Jennifer Iannuzzi, both have personal connections to this rare syndrome due to the diagnosis of children in their family.

As parents and philanthropists, they quickly identified a significant gap in professional awareness, treatment knowledge and research funding for Smith-Magenis Syndrome. While some key research discoveries have been made prior to 2010 with regards to the SMS phenotype, there are still too many questions left unanswered—primarily because SMS research is vastly underfunded.

The Smith-Magenis Research Foundation is working to solve this problem.

A Quick Look at How We Spend:

SMS Research Foundation Progress Statements
$1,000,000

In donations to our organization since 2010

90%

Of contributions go directly to research

SMS Research Foundation Our Core Values

Accountability

We are accountable to each other, the researchers with whom we work and the families we serve.

Curiosity

We welcome and value different perspectives. The diversity of viewpoints propels us forward. We avoid being judgmental.

Integrity

We are ethical. We operate with transparency.

Trust and Candor

We are collaborative. We build trust through respective, honest communication with each other and the families we serve.

Humility

We don’t have all the answers. We learn from our failures as well as our successes. We place mission before ourselves.

Commitment to Excellence

We have high expectations. We believe that research will change lives. We are committed to making a difference.

Empathy

The families we serve lead challenging lives. Everything we do, we view through this lens.