I first "met" Ryan after BlogHer 2009. I saw hundreds of hits to my personal blog from a blog called Pacing The Panic Room and clicked over to see who was sending so much traffic my way. He had taken a photo of me laughing with my hand by my face and, well, click on over if you want to see why it was so funny. We became Twitter/blog friends and I admire his photography and writing immensely. I finally met him at this year's BlogHer in New York and he's just as engaging in person as he is online. When I heard about this album that he had put together to raise funds for SMS (Smith-Magenis Syndrome) I wanted to highlight it here on the Daily Grommet blog. We're not the only ones to back the cause - both Dooce and The Pioneer Woman have done their part (as have others) to send traffic love his way and keep the album at the top of the charts. Let's learn more about Ryan and his cause.
1.Can you tell our readers a little bit about yourself? Who you are, what you do, how you got to be so Internet famous? (*I* know it's because you're a brilliant photographer and ridiculously awesome, but maybe link to some of your fun stuff and that sweet series of Cole when she was pregnant. Or maybe it's for a whole 'nother reason altogether?)
Internet famous? When did that happen? I thought you had to have like over a million views on “you tube” and have someone “auto tune” you to be considered internet famous. I’m just a jerk with a blog. I started Pacing the Panic Room when I got married and quit bar tending, and put my night life behind me. I wanted a way to make all my friends feel okay about married life, so they would want to quit partying every night of the week, get married, and have babies...That way we could all still hangout together. Pacing the Panic Room truly began as a way to let my friends know what I was doing, and how I was feeling about it, as I was one of the first to break away from that pack of Peter Pans. I was so excited and terrified to be starting this new life, and I had made a choice early on that I wouldn’t let being a husband and a new father mean that I had to lose my identity, and the big one for me, not letting go of my dreams. So the blog has been the building of my family, not just the wife and kids story, but both Cole and I were just starting our careers when the blog started. So there has been a strong emphasis on my photo jobs. As it turns out, it hasn’t been my professional work that gets much attention, rather the personal at home projects I do. Mainly the maternity series I did documenting Cole’s pregnancy. I can’t believe the reaction to it http://pacingthepanicroom.blogspot.com/search/label/the%20belly%20pictures%20series
2. Your son has been diagnosed with SMS (Smith-Magenis Syndrome). Can you tell us what that is, and what that means for him and for your family in the long run?
The Littlest Buddy is my step-son and when I first met him he was this adorable, silent, little 3 yr old boy. He was so tiny for his age. He is six now and still only weighs 30lbs. The only words he could actually say were “apple” and “mama.” Cole had him in all kinds of therapy: speech, occupational therapy, and physical therapy. She had no diagnosis for him (despite years of trying), and had been down so many paths of various Doctors scratching their heads baffled. Then, it was March of '09, and Cole was 23 weeks pregnant with Tessa (our baby girl) when she got the call that LB had a genetic disorder called Smith Magenis Syndrome. The developmental pediatrician called her and told her at her job. Who does that? This Doctor muttered some clinical cold definition that she was reading out of a book, and said she was not familiar with SMS, and that Cole should just call a geneticist to schedule an appointment to find out more. The only geneticist we could get an appointment with didn’t have any openings for months. So, we had to turn to the internet to find out what this all meant for us, and for LB. It was a shock, don’t get me wrong, not because of the list of symptoms and characteristics, but it was truly the first time that the reality set in that this wasn’t something that LB was going to eventually grow out of. Nothing else really changed at all. He was already in all kinds of therapy, and we had been working hard on all of his delays-- only now, we knew this was going to be a life long challenge for all of us. So what became our priority was to separate the boy from the symptoms, to be sure that we knew who LB truly was inside of all of these delays and characteristics and profiles being dumped on us. The benefit of having the diagnosis is that we can fine tune his therapy, and we found a small community of parents and researchers at a site called PRISMS that we could gain insight and perspective from and learn about Smith Magenis.
3. You rallied people together to make an album to raise funds for SMS. I love this idea. Who is involved in the project and who has helped to promote the cause?
A web storm :) I had heard someone say this once. “Web Storm.” I can’t remember where, but I loved the idea of getting SO many people to simultaneously make enough noise about something, that it would thunder across the web. I knew that trying to get a bunch of people to care about a rare genetic disorder wasn’t going to go far, so the first thing I had to do was make something to attach to this cause to champion. The kids album “Do Fun Stuff” was born. It made sense to make a kids record since I had so many parents reading my blog. I had worked in the music industry for awhile in one of my past lives, and I was still buddies with some great bands. So I begged them to please make me songs that were easy on the parents, but that kids would respond to. I had to make something parents would want. So I came up with the idea to make “A kids record for parents.” I knew that if I could just get people excited about this music, they would take a second to see what it was attached to, in this case SMS. Everyone’s always like: “What’s that?!” and as soon as that happens, the info is right there. So in the end a bunch of people got educated about SMS, and at the same time I made it really easy for them to help, they just had to buy this album of really great tunes, and all the proceeds went to a fellowship to create more research with PRISMS. (Parents & Researchers Interested in Smith Magenis Syndrome)
So many people have helped out with this album - the list of people to thank is enormous and overwhelming. When I first made the plea on my blog to pretty please help out, I ended up with about 300 emails of people who signed up to post about the album on the release date. By the time the album actually was finished being made and launched, I had collected about 100 more emails. So on August 30th we all posted about the album on the same day, at the same time, and with the same message, and we linked to the album to buy. In just a few hours, so many people had tweeted the #dofunstuff hashtag, and posted the album widget that I had made, that the album debuted at #1 on iTunes in the Childrens Music charts. It was incredible. Such a huge accomplishment and I was so proud of everyone that got involved. I mean a bunch of personal bloggers totally crushed big music labels, we beat everything from Disney, to KidZ Bop, to Yo Gabba Gabba. Since then we have dropped and fluctuated in the charts from day to day, and I have been extremely fortunate after the initial big buzz had died to get some HUGE boosts from: Dooce, Pioneer Woman, Ohdeedoh, Cup of Joe, Design Mom, Mama Pop, the list goes on. It seems like every time the album starts to drop in the charts someone will come along and put some light on the album and shoot it back to the top. I mean to have help like this after Cole and I spent the first months of the diagnosis feeling helpless is really beautiful. I really haven’t been able to wrap my head around the response. It was so important to Cole and I to physically do something to help. We wanted to create a chance for more research to be possible. The more case studies there are the more info is available, and so the goal has been to raise enough the first year that a new case study is done.
We decided early on that this would be a yearly project for us. Do Fun Stuff vol. 2 is already being worked on.
4. We're excited to share your story with our readers and help spread the word about SMS. Is there an official website where people can go to to learn more information?
Check out our Monster widget: http://www.dofunstuff.net there is good basic info when you click the tab “our cause” and within this space there are links to take you to PRISMS where you can really learn a bunch more about SMS and the charity.
5. Last (and most definitely not least), where can people buy the album to help support PRISMS with SMS and research?
The album is available on iTunes and if you click on the monster widget on the iTunes link, you are juts a click away from purchasing the album. There is also a donate button at the bottom of the monster widget if you would like to make a bigger donation than just an album purchase, feel free to unburden yourself from all that heavy money in your pockets. 100% of the proceeds go to this charity, none of the musicians, or artists, or graphic designers, or any of the people that helped “Do Fun Stuff” come to life are making money on this. They have all donated their time and talent and made a really superb album for you.
When we made this widget, we wanted it to have everything you needed in one little adorable micro site. I hope it came in handy for this post :) He even has a little share button for any of you who would totally love to post this monster on your blog. I know what you’re thinking... You’re thinking: “that’s a great idea Ryan.” So please go and share that widget. Get yourself “Do Fun Stuff” and then, stop by my blog and tell me about your post here: http://pacingthepanicroom.blogspot.com/2010/09/love-letters-from-us.html