Sunday, November 22, 2009

Sending Out an SOS to the World

This is an update to a post I wrote on September 26 about SingSOS! (sing Songs of the Spectrum), the incredibly caring and committed group whose members have been spending every waking hour of the week – month after month – for a couple of years now – putting out an album of songs they've written about the experience of living with a child (or being a child) on the autism spectrum. (Along with a specially selected treasury of must reading for anyone interested in this growing issue.)

Well, the songs have all been recorded by a fantastic roster of well-known and emerging artists, including Jackson Browne and Valerie Carter, Dar Williams, Ollabelle, Richard Julian, Teddy Geiger, Marshall Crenshaw, Jonatha Brooke and many more.

It sounds terrific, and looks terrific, too. Thanks to the many submissions received from some very talented artists with autism who vied to have their works chosen for the CD's cover, which has been designed by former Atlantic Records creative director Liz Barrett.

Now here's the real news: the SingSOS! site is now up and running. You can listen to and read about the songs, look at photos of the artists, click links to other informative sites, and most importantly, purchase the music –in your choice of digital download or physical CD package.

But you get to choose more than just how to receive the music. You can also choose which leading autism group gets your donation. All the major groups are represented in a drop down menu as you make your purchase. If your favorite group isn't there, there's a box in which you can suggest one to be added later. There's also a form for groups themselves to apply.

Ninety percent of all proceeds will go to these groups. All SingSOS! asks of them is that they promote the CD among their memberships. (The remaining ten percent goes to production costs and a war chest for another push in April, which is Autism Awareness Month.)

Great music and great information. All put together by people who really care about this growing issue.

Please buy the album. Or at the very least, spread the word.

Let's help these folks put out a much needed SOS.


– Mark

SubscribeBookmark and Share

Sunday, November 15, 2009

What We Were Hearing About the Hearings

On the 12th and 13th of last week, the FDA held its hearings on establishing guidelines for social media for pharma.

Or, as it was officially titled, the much catchier, "Promotion of Food and Drug Administration - Regulated Medical Products Using the Internet and Social Media Tools."

As expected, it was a big event for the industry, with over 800 people trying to register online for the 300 available seats and everyone and their mother offering opinions across the Twittersphere.

Ironically, though, nobody could tweet directly from the hearings themselves. There was no WiFi available in the room where they were being held.

The big news the first day seemed to be phARMA's recommendation of a "Seal of Approval"-type logo that would go on all social sites that meet the FDA’s guidelines for fair balance, non-promotion of off-label uses, reporting of adverse effects, etc. A very smart and extremely simple opening salvo by the industry.

Of course, to back this idea up, every pharma company would have to actively moderate every discussion and respond quickly and forcefully in the event of an off-label suggestion or the mention of adverse effects. It's where things are going any way. Might as well grab the bull by the horns.

From what I picked up, the second day of the hearings seemed to be a little more confrontational and less kindly towards the industry's point of view.

Considering all the data that shows how much people depend on the Web for their healthcare information, you'd think the FDA would want itself and pharma to all be on the same page when it comes to helping people make smart, educated decisions on what could literally be matters of life and death.

At least the discussion has begun.

– Mark

SubscribeBookmark and Share