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Tribute to Dr. Ellen Magenis

imgEMagenisIt is with heavy hearts that PRISMS announces the passing of our dear and caring colleague, R. Ellen Magenis, M.D. In the early 1980's, Dr. Magenis and Ann C.M. Smith, MA, DSc (Hon), CGC, discovered the deletion in chromosome 17 that became known as Smith-Magenis Syndrome (SMS). Dr. Magenis served on the PRISMS Professional Advisory Board and was a Professor of Genetics at Oregon Health and Science University. Although Dr. Magenis was a well known pioneer in the genetic field and a highly respected physician/clinician, she was simply "Ellen" to the families and individuals for whom "Smith-Magenis" was a household phrase.  We extend our sympathies to Ellen's children and grandchildren and we express our gratitude for Ellen's devotion to our families.

R. Ellen Magenis, M.D., September 24, 1925 - February 4, 2014.

Newly Diagnosed

If you are associated with a person who is recently diagnosed with Smith-Magenis Syndrome, you're encouraged to begin your search for more information with the "WHAT IS SMS?" menu above. For a more in-depth review of SMS, please see the In-Depth Review page or you can access it directly on the GeneReviews web site.

2014 Conference Information & FAQ

The 2014 International Conference is fast approaching and registration for the conference is now open! To register and for more information, please see the 2014 Conference page.

What's New

New SMS Research Study

Do you have a child with Smith-Magenis syndrome? If yes, please consider helping us in important research on microdeletion syndromes. Natera is a genetic testing lab that is developing a non-invasive prenatal screening test (done on a sample of mother's... Read more

New Research Study - Speech Language Pathology

Expanding the research of SMS into the field of speech language pathology, graduate student Anna Hesson, B.S. and Dr. Bill Cupples, Ph.D., CCC/SLP, Professor and Speech-Language Pathologist at Eastern Michigan University are researching the language and communication characteristics exhibited by... Read more

PRISMS Cookbook - On Sale Now!

The PRISMS Cookbook includes: over 200 delicious recipes submitted by PRISMS family & friends 8  photos of our talented chefs description of SMS & the history of PRISMS The PRISMS Cookbook makes a great gift for the holidays, house warming's, bridal showers and birthdays!... Read more

The Medicaid Reference Desk

The Medicaid Reference Desk is a project of The Arc of the United States, the largest national community-based organization advocating for people with intellectual and developmental disabilities. This project is funded by the Administration on Developmental Disabilities, a government agency... Read more


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