01
Sep
5

There is this guy that I read, Ryan from Pacing the Panic Room. He’s a pretty good guy, I think. A brilliant guy, figuring out how to get his photography career off the ground, doing the best for his family, doing so in a funny and clever way. An all round stand up guy, really.

His step-son, LB, has Smith Magenis Syndrome. What I love about Ryan, is that on his blog he seperates the boy from the syndrome, while still acknowledging that LB has it. LB is a boy. He just also happens to be a boy that has SMS. A sweet, gorgeous little character. Though sometimes the glimpses he allows into LB’s life, well, it sounds hard. And I admire the attitude that Ryan and his wife Cole have. Like I said, an all round stand up guy.

To help spread awareness about SMS, and to raise funds, Ryan, with his music connections (as a record label guy, booking manager for clubs – he’s got an interesting past!) has put together an album. A KIDS album. An amazing kids album, actually. A kids album for parents too, the kind that is okay to listen to, and doesn’t make you want to tear your face off. No seriously.

100% of the proceeds from the sale of this album will be used to establish a SMS Research Fellowship that funds a graduate student to study SMS and support the SMS community.

Sounds good, right?

If you want to know more, visit pacingthepanicroom.blogspot.com.

If you wanna get on the bandwagon, get the cute green monster widget that plays the tracks, directs you to itunes and tells you where to make a donation? Go to dofunstuff.net or click “Share this widget” on the monster above for the code.

If not, that’s cool too. I like the idea of making a difference, but not everyone is into rocking the boat. However, I’m pretty sure most of you ARE into helping brilliant causes. So, please, visit dofunstuff.net. Check out their cause. Listen to the tracks. Buy the album. Learn. Love. And Do Fun Stuff.

Posted in: Pimped

5 Comments to “Smith Magenis Syndrome + Do Fun Stuff”
  1. Ryan says:

    This has to be one of the most flattering and nicest posts I have ever read about my blog, my family, and wow. Just thank you. Thank you for this. You know, you’re right, I do have an interesting background, I should write about it sometime :)

    • Elly says:

      @Ryan – You’re welcome hey. I’m happy to wave the ‘Do Fun Stuff’ banner – you are doing brilliant things for SMS. Not to mention that I’m pretty sure most of us are on the Do Fun Stuff bandwagon because you are everything my post said you are, and more!. :) – elly

  2. Awmber says:

    Wow Ell, this looks great! Thanks for showing me :)

    • Elly says:

      @Awmber – No problem, hey! It’s a pretty great cause, I think. There’s a whole #dofunstuff bandwagon, I think the album made #1 on kids chart on its first day :) I especially like the ‘Biscuits’ Song – Scampi is brilliant! – elly

  3. Emily Jane says:

    Totally going to check this out right away. Thank you for spreading awareness of a good cause :)

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