Do Fun Stuff!

I know this is a little off topic, but please take the time to CHECK THIS OUT!

I have been following the blog Pacing the Panic Room by Ryan Marshall. He has a 6 year old step-son dealing with Smith-Magenis Syndrome, which in short is a developmental disorder that affects many parts of the body. Ryan has put together a children's music album like no other! The album hit #1 on itunes!! Please check it out and buy the album or make a donation. All of the proceeds go to a grant fund available to grad students who choose SMS as their field of choice. I hope you enjoy the music and become a follower of Ryan's blog (you will get hooked)!
Please read the excerpt below written by Ann Smith of Smith-Magenis Syndrome from Ryan's blog...

Smith-Magenis syndrome was not recognized or named until after 1982 when the first two children were identified with deletion 17p11.2.  Nothing was known about what to expect for these children, lacking any previous clinical reports of this deletion.   Clinically, the spectrum of features that define this rare syndrome now referred to as Smith-Magenis syndrome or SMS are well described; however, diagnosis is often delayed to early childhood due to lack of awareness of the syndrome among health practitioners. Today almost 3 decades since the syndrome's initial description, increased clinical awareness and diagnostic advances using newer molecular DNA-based techniques hopefully will lead to earlier and correct diagnosis.

Past research efforts and PRISMS' parent conferences focused on SMS have led to further recognition of potential management and treatment strategies likely to benefit children and their families impacted by SMS.  More research is needed.  Research to understand rare syndromes takes both time and funding, but has the potential to advance scientific understanding not only of a syndrome like SMS, but provide new insight about biologic processes that impact the general population.

The ingenuity and dedication of effort put forth by Ryan Marshall and his talented music colleagues with this first release of kids music, Do Fun Stuff Vol 1, in partnership with PRISMS, has the potential to raise awareness about SMS and opens new avenues for fundraising future research. I hope you will join me in celebrating the cause and enjoy listening to all the songs - fun, humorous and catchy tunes for all ages to enjoy!

Ann C.M. Smith, MA, DSc(hon)
Chair, PRISMS Professional Advisory Board