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:
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.