About Us

The Smith-Magenis Research Foundation is dedicated to improving the lives of children born every day with SMS. We fund only the best, most comprehensive SMS research projects along with the best and brightest scientists focused in this area.

Our Progress

Since 2010, significant research has been funded and critical progress is on the horizon.

  • The SMS Initiative, a five-year collaboration focused on SMS research, was launched with the Baylor College of Medicine.
  • Significant research is being conducted on the function and regulation of RAI1, the primary gene responsible for SMS. This may help treat the disorder at its very root.
  • Relationships have been established with a specific focus on identifying similarities between SMS and other neurodevelopmental/genetic disorders with overlapping phenotypic characteristics to establish and advance the therapies and therapeutic approaches used to treat individuals with SMS.
  • The first international partnership supporting research on SMS was established with Pas à Pas avec Alexia from France, bringing a global focus to SMS and the progress of SMS research.
  • All research projects are approved by a Blue-Ribbon Scientific Advisory Panel as critical steps towards the goal of developing treatments specifically for Smith-Magenis Syndrome.

Through 2015, the SMS Research Foundation has created greater urgency around the need for new and continued science investigation by committing nearly $700,000 towards SMS research.

A Quick Look at How We Spend:

SMS Research Foundation Progress Statements
$750,000

In donations to our organization since 2010

90%

Of contributions go directly to research

Mission

Our mission is to support research to improve the knowledge and understanding of Smith-Magenis Syndrome (SMS) so that viable therapeutic options can be developed in order to improve the quality of life of those with SMS.

From Left to Right: Dan & Missy Longman, Jennifer & Christopher Lannuzzi

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.

Below is a short video about the SMS Research Foundation.