It's the original logo from AVM Survivors Support
Thursday, March 31, 2011
AVM Survivors Support Site
It's the original logo from AVM Survivors Support
Google's +1
"Google's +1 button is a smart move and what I was hoping they would launch. The real power will come when sites embed +1 buttons prominently to get better organic search rankings. Yes, I realize users might prefer to share via FB vs Google and hence prefer FB Like buttons, but the countervailing force is that websites will have a greater incentive to get users to press +1 over Like. Think of it like retail, where -- while it does matter which products consumers prefer -- it also matter how much and which shelf space the store allocates to each the product. FB has an advantage with users ("consumers like the product more"), but Google has an advantage with websites (they'll get better "shelf space")."I've been dying for something like this from Google for a long time because the Ben's Friends Patient Support Network depends on people finding us in Google. Can you imagine how frustrating it is for someone who has just been diagnosed with a rare disease to go home and comb through 200 search results before finding a support community? This drives us crazy and I feel terrible for the patients.
Facebook implemented it's Like button about 6 months ago and in about 3 days our bigger networks were racking up 500+ Likes. That made it really easy to find us in Facebook. We get a ton of traffic from Facebook now and it's really helped. I think this +1 feature will be even bigger for us. I'm glad Google finally rolled it out.
Wednesday, March 30, 2011
Tuesday, March 29, 2011
Tim Goodman on the Mad Men Delay
But whatever the price tag Weiner’s asking for, whatever the changes he’s being asked to make — more commercial time or reduction of characters allegedly among them — it’s all beside the point now. AMC and Lionsgate balked two years ago at Weiner’s salary demands and here we are again. Apparently there’s been too much distance — and too much success —- at AMC to remember where they were before making Mad Men.
They were nowhere.
AMC was a second rate movie channel (and that’s being generous) until Mad Men put it on the map. No Mad Men, then probably no Breaking Bad (which itself was partly a free gift from FX). So any discussion of Mad Men’s worth goes far, far beyond the value of the actual show as it relates to the money it brings in.
Amazon Music Cloud
It's worth noting that I've been buying a lot of my music through Amazon lately because it's almost always cheaper. However, my impulse buys are alwasy through iTunes because that's where I listen to my music. Amazon downloads their MP3's directly into iTunes, which is what got me buying there in the first place. This is another big step. Probably not enough to get me to scrap iTunes but it's a small start (note, I don't want to scrap iTunes, I just want to listen to my library everywhere, on any device).
Monday, March 28, 2011
AVM Survivors Fundraiser for TAAF Walk in San Francisco
This is single greatest fundraising video I’ve ever seen!
AVMSurvivors.org is raising money for the Annual TAAF Walk in San Francisco. There are tons of cool prices and a small % of the proceeds goes to Bensfriends.org so we can continue to maintain AVM Survivors.org.
P.S. Thanks Shalon for your amazing energy, video skills and for spearheading the fundraising!
Sunday, March 27, 2011
Saturday, March 26, 2011
Friday, March 25, 2011
Friday Chill Music (March 25, 2011)
Kenna and I are friends from Kellogg but at first, I was a little thrown off. The first four times I met him, he was wearing a different colored pastel polo shirt. I didn't even know they made polos in shades of pastel purple, green and pink. I was like, "Who is this guy?" But we kept hanging out and I found out what a great guy he is. We eventually started talking music and we had the same tastes. Eventually, we admitted to each other that we each had a long running series of chill mixes. I have Sunday Morning and he has Lemonade. That's when we knew we would be friends for a very long time.
Thursday, March 24, 2011
"We Could Do This Here"
I think part of it is that many Americans don't understand Islam. I certainly don't enough. But one thing I did 5+ years back was visit Bosnia & Turkey and actually go into some mosques and ask questions. I was lucky because I had that opportunity, not everyone does, and I had some awesome tour guides who explained the basics and let me ask every question I could think of. I came away from that more enlightened and tolerant. That's why I liked Clay's post so much. It shows real people stepping up to the challenge and exhibiting their tolerance. That picture says everything, and I hope more people see it.
"These are Coptic Christians in Cairo’s Tahrir Square, holding hands around Muslims during Friday prayer, to protect them from surprise attack.
We could do this. We could do this here, in the United States, to keep our Muslim citizens safe. All of us, Christians and Jews and atheists, anyone committed to the First Amendment, to the idea that religious freedom is essential to American society, could join hands to protect Muslims living here from rising prejudice."
Wednesday, March 23, 2011
Being the Boss
I hope you like this little story and take it for the humor that's it's intended to be.
"I still get a chuckle out of the fact that I’m actually running a company. Not to say I’m not comfortable with my position. And I certainly play the part and project confidence and lead my people. However, it’s just sometimes funny to know that I’m in charge of a real company with 10’s of millions of dollars in sales and hundreds of employees.
Arriving at my plant in Mexico was one such time that I got a chuckle out of being the boss. I arrive and everyone comes in to greet me. I go into my office at the plant and there is a case of Bubu Lubu’s (a mexican candy I like) and bags of cacahuate japonese (cracker peanuts). Lesson learned is that as a boss if you say you like something in a foreign country chances are people pick up on it and will get you lots of whatever you like next time you’re in town. I remember when I worked at corporate, our CEO, mentioned (likely out of politeness) that he liked green jello when he was having lunch at which there was green jello served. Next time he visited that plant green jello was a major part of the meal (chuckle)."
Tuesday, March 22, 2011
Ben's Friends - Please Vote - Finalist in Amazon's Domino Contest
Monday, March 21, 2011
New Vedder
Retaining Millenial Employees
If I’m a 25-year-old and I’m sitting at my desk thinking, “I’ve been doing this job for two
years, it’s time to look around for something else. I wonder what’s next for me,” it would be
easier for me to find a better job in a different city, working for a different company, than
to go into my own company and say, “Where’s a new job for me? How do I get a promotion?”
In part because companies just make the internal career path harder for all kinds of reasons—they don’t publish it as clearly, middle management is often worried about people trying to rise through the ranks. People think, “Oh, I can keep them there for a while because they’re useful in that position.”
If the search costs for finding a new job are easier outside your company than inside your
company, you’re communicating something to them about loyalty as well. That’s another
place where a manager can say, “Look, here’s how career paths go at this institution. Here
are the skills you need, [and] here are the different departments we have.”
But it’s culturally very hard, because it accepts the fact that the employees who are on your
front line, who may well be your best next employees in higher positions, have a much
greater ability to search for opportunity than they used to. And so you can’t rely on them
sticking around for however long you want them to stick around before you promote them.
Sunday, March 20, 2011
New CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) Support Network
Btw - we have a snazzy new video that explains what we are doing at Ben's Friends. It's 57 seconds if you're counting, check it out:
Kelly's Friends - Interested in a Setup?
Here's what you do, click the link or image below, and fill out the questionnaire. Then be patient while Kelly combs her personal rolodex for your perfect match. Let me know how it goes.
Saturday, March 19, 2011
Comfort of Fog : Mystical Photography by Frederic Larson
Comfort of Fog
March 08 2011Tiniest of all jewels ... overcrowded with a thousand legends and a million dreams. Titans on the hills and ghosts in the valleys, and over it all, the cold comfort of fog, shrouding the truth, adding substance to unreality.
Friday, March 18, 2011
Friday Chill Music (March 18, 2011)
Thursday, March 17, 2011
My Submission to the Domino Project
Seth Godin's new venture is called the Domino Project. His team is trying to reshape publishing through it. Their first book is called Poke the Boxand it's all about initiative, taking chances and succeeding in near impossible situations. I submitted Ben to their request for Initiators:
Hi Domino Project - I'm enjoying your blog and first book, Poke the Box. Great work.
My nominee is Ben Munoz. He's a friend of mine and had a stroke in 2006 caused by a rare condition called an AVM. He made it to the hospital and thankfully survived after emergency surgery. While recovering he was really isolated and lonely and couldn't find information on AVM, so he did something about it and "Poked the Box" by starting http://www.avmsurvivors.org/ - a support network for folks with AVM. It's pretty amazing that in his greatest time of need and vulnerability, he did something to help others.
I helped him out a little and once we realized the incredible amount of support and information folks were getting out of the site, we started a couple more, and a couple more, and a couple more. Today, Ben's Friends (http://bensfriends.org/) has 23 support networks for rare diseases and services 8,000+ members and did 250k page views last month. Both metrics are growing at 10%/month but the love and support on the networks is growing exponentially faster through all the connections. You can find patient thank you's on our blog: http://blog.bensfriends.org/
An important part of “Poking the Box” in this case is that AVM and these other diseases are very rare, so there is no profit motive for big health oriented websites to service these folks. Yet because these condition are rare, it's very unlikely that one person in their local network will have the condition, let alone enough people to start a support group. Also, if there is no profit motive, it’s really hard to raise money to fund it. This scared us at first, but we realized a lot of people needed us so we just started them anyways, a Poke the Box Moment. We soon realized two things: 1) The people we were helping were so thankful to have this support that they were eager to help by volunteering to moderate the networks, and 2) Everyone – from patients, to their families to our friends in the community knew they had to contribute a little bit financially to help us stay afloat. Today we have over 50 volunteer moderators across the networks and we’ve funded ourselves through small online fundraisers, like the one last year that coincided with a patient member running the NYC marathon 6 months after open heart surgery (http://www.indiegogo.com/stamler).
Btw - Ben had already started a couple communities when we stumbled upon Seth Godin's book, Tribes. We're very grateful to Seth for writing that book because in a strange way, we felt like it gave us permission to build out the networks. Building these networks seemed like a huge challenge and we had no idea how to fund or operate them. Seth's book gave us just enough courage to make it happen. Thanks Seth.
Sincerely,
Scott Orn
P.S. You can hear Ben tell his story in this 90 second video: http://www.youtube.com/user/bensfriendsorg#p/u/3/ ARJMQ4zlsrk and check out the website here: http://bensfriends.org/
neko case for couch by couchwest and 826 national - captains dead
Clean Bee Baby

Wednesday, March 16, 2011
SPRING NOTES: Lincecum opens up while Belt opens the floodgates | Extra Baggs
ON WHAT HE GETS AT IN-N-OUT:
"Lately it's been three double-doubles, two fries and a half strawberry/half chocolate milkshake. That's just one meal. No animal style. I get plain cheeseburgers with some ketchup and that's about it, maybe that's why they go down easier. I'm probably going to go there after this."
Reblog: Dear Twitter
"It’s easy to forget just how exciting and revolutionary ICQ was. Almost overnight it took two of the most powerful features of the walled-garden online services—being able to see when your friends were online and message them in real time—and brought them to the Internet. People signed up in their millions, and for good reason.
Unfortunately, while everyone loved the service, it only took a couple of upgrades before the client software was universally loathed.
The problem was there was only one company making ICQ clients. Thus there was no competitive pressure to improve the core experience of sending and receiving messages from your friends, but boy was there pressure to add just one more advertisement panel, or yet another button to pump sponsored newsfeeds and stock quotes to millions of entirely uninterested college students."
Tuesday, March 15, 2011
Primer on Winning Your NCAA Bracket
Dominate Your 2011 March Madness Bracket Pool
The Lottery Ticket Entrepeneur
"The growing popularity of SXSW is directly related to the rise of lottery ticket entrepreneurs. Those that think they will be able to hack some feature together and be the next Foursquare, Twitter, etc.
While that does happen, it is about the same frequency as winning the lottery. If you are going to start your own business you better do it realizing that you will not be the lottery winner and for you like me, will have to roll up your sleeves and get dirty for a few years before seeing the hopes of some sort of positive outcome."
Overnight successes take years, and a big splash at a conference can't do it for you.
Monday, March 14, 2011
An Open Letter to Jon Bon Jovi On What’s Really “Killing The Music Business” | iLounge Backstage
"...But now you're putting our happy memories in jeopardy. For whatever reason, you told The Sunday Times Magazine during an interview that "Steve Jobs is personally responsible for killing the music business." I'm not going to try and tell you all of the ways that you're deeply, profoundly wrong. Instead, I'm just going to focus on a few of them.
(1) My wife has carried around all of your albums (and many more) on Steve Jobs' Apple devices since she bought her first iPod years ago. I know from personal experience that she taps into your collection at home, in the car, and on vacations—literally at the drop of a hat, whenever she wants. If she hadn't, I would have forgotten about your band back in the 1980's. No CD player or radio station would have changed that, I can guarantee you.
(2) When we got married, her music collection became mine and vice-versa. It's because of her collection of Bon Jovi music—and her constant access to it on Apple's devices—that I could look at my iTunes library and realize how many of your songs I liked.
(3) We attended your concert in Toronto a month ago. Photos from that concert were uploaded to Facebook using our iPhones, and from my digital camera using a Mac. And when I was testing the iPad 2, guess what I used as examples to show off how the new version of iMovie can edit videos from digital cameras? Sample concert footage. And it looked pretty great, too."
Sunday, March 13, 2011
Saturday, March 12, 2011
Friday, March 11, 2011
Millions saved in Japan by good engineering and government building codes
From the NY Times, Japan's Strict Building Codes Saved Lives:
Had any other populous country suffered the 8.9 magnitude earthquake that shook Japan on Friday, tens of thousands of people might already be counted among the dead. So far, Japan's death toll is in the hundreds, although it is certain to rise somewhat.
Over the years, Japan has spent billions of dollars developing the most advanced technology against earthquakes and tsunamis. The Japanese, who regularly experience smaller earthquakes and have lived through major ones, know how to react to quakes and tsunamis because of regular drills -- unlike Southeast Asians, many of whom died in the 2004 Indian Ocean tsunami because they lingered near the coast despite clear warnings to flee.
Note: the title of the post is a reference to a tweet by Dave Ewing:
Tags: earthquake JapanThe headline you won't see: "Millions saved in Japan by good engineering and government building codes". But it's the truth.
Thursday, March 10, 2011
Why Emoticons Work in Email
Here's the intro quote on the article:
"According to Goleman, there’s a negativity bias to email – at the neural level. In other words, if an email’s content is neutral, we assume the tone is negative. In face-to-face conversation, the subject matter and its emotional content is enhanced by tone of voice, facial expressions, and nonverbal cues. Not so with digital communication."
Wednesday, March 9, 2011
Exclusive: Bill Gross Dumps All Treasuries, Brings Total "Government Related" Holdings To Zero, Flees To Cash - No QE3? | zero hedge
Based on still to be publicly reported data by Pimco's flagship Total Return Fund, the world's largest bond fund, in the month of January, has taken its bond holdings to zero(and -14% on a Duration Weighted Exposure basis). The offset, not surprisingly, is cash. After sporting $28.6 billion in "government related" securities, TRF dropped to $0.0, while its cash holdings surged from $11.9 billion to a whopping $54.5 billion (based on total TRF holdings of $236.9 billion as of February 28). This is the most cash the flagship fund has ever held, and the lowest amount in Treasury holdings since January 2009 before it was made clear that the Fed was going to adjust QE1 to include Treasurys in addition to Mortgage Backed Securities. PIMCO's Treasury holdings peaked in June 2010 at $147.4 billion and have declined consistently ever since. And while we expected that the spike in MBS holdings (at times on margin) was indicative of an expectation that QE3 would monetize mortgage backed securities, the ongoing decline in that asset class now leads us to believe that Bill Gross is now convinced there will be no QE3 at all, at least based on his just putting his money where his monthly pen is! And if Bill Gross, the most connected person to the upcoming actions by the Fed, believes there is no more quantitative easing, it is really time to get the hell out of dodge in all security classes - bonds, and most certainly, equities.
Tuesday, March 8, 2011
Monday, March 7, 2011
Sunday, March 6, 2011
Friday, March 4, 2011
Friday Chill Music (March 4, 2011)
Thursday, March 3, 2011
Sugar Paper's New Blog
They also posted on their favorite things on Etsy right now and I liked this picture of NYC. Nice work ladies.
Wednesday, March 2, 2011
Book Rec: Evil Plans by Hugh MacLeod
Tuesday, March 1, 2011
Eggers on Brian Wilson's Beard
via Scott Fausel.
Dave Eggers article on Brian Wilson's Beard is one of the funniest articles I've read in a long time. It's a masterpiece.
I've been a beard-for-hire for 50 years now. Fifty-seven, actually. I pretend I don't know the exact number, but of course I do. I remember every year, every gig. It's been a great ride.
Everyone thinks I started with Fidel, but he wasn't the first job. I wasn't some overnight success. It took years to get to that point. Everyone back then was trying to work up to getting a gig with a commandant or generalissimo, but I was happy for any work at all. My dad was a handlebar, strictly barbershop quartets and all that, and my mom was a lady 'stache, mostly working circuses.