This page is a work in progress and by no means exhaustive. Please let me know if you know of other organizations, books, blogs, etc, that have information or stories of Smith-Magenis Syndrome (SMS).
ORGANIZATIONS FOCUSING ON SMS IN THE US:
PRISMS – Lots of information on SMS here. Seems to be the go-to site/organization on this syndrome.
SMS Research Foundation – Founded by two families with kids with SMS
Taylor Bug Kisses Foundation – Founded by a family whose daughter has SMS. There is a parent/family registry here and also a community forum through this site to connect with other families with SMS kids.
The Gift of SMS, Megan Nelson, Richmond Magazine, February 16, 2017
Can the Genetics of a Rare Disease (Smith-Magenis syndrome) Hold Clues to Obesity and Autism?, James Radke, PhD, Rare Disease Report, November 2, 2016
Paul Kalathini, Smith-Magenis Syndrome, and Certainty in Medicine, Abraham Schwab, March 20, 2015 – This article was written by a friend of mine about our search for a diagnosis for Aurelia and people’s desire for definitive answers from medical professionals and whether that’s always necessary.
New center dedicated to advancing research of complex syndrome, November 19, 2013
Life with Smith-Magenis Syndrome: Instagram Photos of My Son, April 11, 2012
Molecular and Neural Functions of Rai1, the Causal Gene for Smith-Magenis Syndrome, Neuron, Volume 92, Issue 2, p392–406, 19 October 2016
BLOGS FROM OTHER SMS FAMILIES:
Taylor’s Journey with Smith-Magenis Syndrome – This website has a lot of information, including a blog. It’s written by the founder of Taylor Bug Kisses, whose daughter has SMS. I’m not sure it’s being updated anymore, but it’s still useful, I think.
Strength for Sydney – Written by the co-founder and president of the SMS Research Foundation, whose daughter has SMS.
Flight Platform Living – Written by the mama of a little girl with SMS. She writes about all aspects of her family life, not just SMS. They are in England. (As of March 2015, this blog has been made private.)
Breakaway – This is a camp for families of special needs children. It looks like the SMS camp happens every couple years. There is a good video from an SMS mom on this page speaking about her experience with diagnosis, when she first started seeing certain behaviors in her child and the importance of a respite camp for families with SMS kids.