Please Help Alexis Wright and Team Fight Cystic Fibrosis at the Great Strides Walk on May 14th, 2011!
March 2, 2011
Coming up on May 14th, 2011 is the annual GREAT STRIDES fund-raising walk to fight Cystic Fibrosis. As you probably know, our daughter Alexis has CF and we’d like to ask you to help her in this fight.
(To donate online, visit http://www.cff.org/great_strides/teamalexis)
GREAT STRIDES is the Cystic Fibrosis Foundation’s largest and most successful national fund-raising event and we’ve chosen to make this event the main focus of our fundraising efforts each year. Last year, thanks to you, Team Alexis raised more money for CF research than ever before. It’s hard to find words to express how much it means to see our friends and family come together like this in support of something so dear and important to us.
But the fight is definitely not over and we can’t rest yet. Although research and care supported by the CFF is making a big difference in extending the quality and length of life for those with CF, there is still no cure. CF is the top genetic killer of children and young adults in the US and we continue to lose precious lives every single day. We will not rest until we find a cure so that Alexis and the thousands like her around the world can be safe from this deadly disease.
You can make a secure donation online at http://www.cff.org/great_strides/teamalexis. Click the “Donate” button to make a donation that will be credited to our team. We would deeply appreciate any donation you can make! Your donation will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education. We are closer to a cure than we’ve ever been, and can’t stop now!
We also hope you can join us at the walk! It is a lot of fun and a great chance to spend some time outdoors with friends and family. It’s by the beach and the harbor in beautiful Dana Point, CA and the wonderful volunteers serve breakfast and lunch.
Aside from donating, spreading the word is probably the most important thing we can do so, please consider passing the information on to several people you know. If you want to join as a walker please click the “Join my Team” button on the site. You can even create your own page and set your own personal fund-raising goal and easily send a link to other friends and family. Let’s spread the word and raise as much as we can! Thank you VERY much. Your support in this fight means a great deal to us.
-Doug and Tina Wright
More information:
Quest Software Matches!!!
Last year, Doug’s employer, Quest Software donated $10,000 in matching funds when we hit our fundraising goal. They’ve offered the same this year if we can hit $20,000! So, with your help to get the Quest match, we stand to raise $30,000 or more this year!
Less email, follow us on twitter.
We respect your time and won’t spam you with email about this. Please follow @alexisgr8stridz on Twitter if you would like to receive information and updates leading up to the walk. If you would prefer email updates, please let me know!
To learn more about CF and the CF Foundation, visit www.cff.org.
More about Alexis
For a more in-depth, personal perspective on Alexis’s fight against CF, you can read my blog post “The Lesson of Simply Breathing”.
Alexis’s video invitation
We want to convey our deep gratitude to everyone who supported and donated to Team Alexis for the Great Strides Walk 2010 in Dana Point! We are incredibly lucky and grateful for the amazing support of so many friends and family members. In individual donations, we raised over $18,000! And,as many of you know, the company I work for, Quest Software, contributed $20,000 this year ($10k at the Klassic Invitational CF fundraiser and $10k at Great Strides). Between all of the fundraising Team Alexis has done this year, we have raised almost $40,000 to fight CF!!! This is, by far, our best year ever.
We really are making great strides in treating and maybe even curing this deadly disease. Here are some of the current highlights:
In February, a new inhaled antibiotic named Cayston was approved by the FDA. It is the first new inhaled antibiotic developed for CF in more than a decade. It is so critical to have new antibiotics, due to the development of resistance and the particularly resistant and dangerous bacteria that can attack the vulnerable lungs of CF patients.
Also, Vertex Pharmaceuticals is developing two oral compounds designed to treat the basic defect in cystic fibrosis—a faulty gene and its protein product, called CFTR. The compounds, VX-770 and VX-809 are amazing medical accomplishments and are in clinical trials now. These drugs are the first to truly address the genetic defect that is at the root of CF and represent, if not a complete cure, at least vastly improved control of the disease for some CF patients.
It’s very difficult and expensive to get new drugs this far and through the rest of the approval phase but, with the amazing support of the CFF and donors like you, we are going to get there! It’s an amazing time and we are filled with hope. But the fight is not over, and there are many who might not make it to see these drugs become available and because of this, we are motivated to do everything we can to support and speed this process.
Your support is making this possible and we want to thank you from the bottom of our hearts. Because of you, we are getting closer every day. Because of you, we will beat this thing. Thank you!
Team Alexis is off to a good start this year fundraising to fight cystic fibrosis at the Great Strides walk in Dana Point, CA on May 1st, 2010. Thank you very much to all of you that have contributed so far. Your help means the world to us. Although our team total is not quite at the same level we saw last year at this time, we have really exciting news that is giving us great hope:
To join, contribute, or spread the word, please visit www.umanu.net.
Thank you very much. Together, we can make great strides to cure cystic fibrosis!
The Lesson of Simply Breathing
March 7, 2010
We found out that our daughter Alexis had Cystic Fibrosis when she was 4 months old. It took us awhile to come to grips with it, and there are many lessons that we’ve learned along the way so far. I want to share 2 of those lessons here.

The first lesson became clear to us very quickly: Fight. Fight every day in every possible way. We don’t accept the current prognosis for people with CF. We simply do not accept it and we won’t rest until a cure is found and the whole idea of CF is a distant memory.
We fight CF every single of our lives. Hundreds of pills, multiple breathing treatments, things to make sure you do, things to make sure you DON’T to do, insurance battles, doctor visits. Hours of daily commitment. It doesn’t matter how tired we are, or how many things come up in our busy lives, her therapy regimen is literally as important as the air we breathe and there is absolutely no excuse that will justify missing a single pill or treatment. There’s just too much at stake.
And all of this therapy is not a cure. It’s simply a bridge to a cure – adding years and years to the lives of those with CF. But this bridge is longer and stronger than it’s ever been in history. Just 50 years ago most didn’t make it to elementary school and today there are so many adults with CF that we’re having to find new ways of addressing and serving this new, older CF population. This is a huge and inspiring achievement and it’s because of people coming together to fight for a cure. It’s because of the amazing Cystic Fibrosis Foundation (cff.org). It’s because of clinicians, researchers, volunteers, donors, corporations, and most of all, the people with CF and their families. We’re fighting every day and winning. Just last year, the first drug that may truly address the core cause of CF went into Phase 2 trials and there are several drugs in the pipeline now that are extremely promising. This is not the finish line by any means, but it’s a HUGE step and all the more reason to keep up the fight.
The second lesson took us more time to fully understand and we didn’t figure it out by ourselves – Alexis had to help us see it. I don’t know why, but people who face challenges like this – the ones who we might think would be cynical or less hopeful – these are the ones who seem to see the magic and the beauty of life best of all. After everything she’s been through, Alexis is full of love and she giggles with joy at the smallest pleasures. She lights up the room and the lives of everyone she touches. And she inspires us. The lesson we’ve learned from Alexis is to celebrate life. To be grateful for your family, and your friends, and for simple pleasures. To realize that loved ones are what life is about and to share your ups and downs with them and tackle the best and worst of it together.
And it’s not just Alexis. I see this in the outlook of so many people with CF and their families and others involved in the search for a cure. And the same is true of others who face great obstacles in many other ways. Sometimes it takes a true challenge to really see how much tomorrow is worth fighting for.
I’d like to ask you to do something right now as you’re reading this. I’d like to ask you to just take a deep breath. Breathe in…. and out. Now, I’d like to ask you to do it again and this time, think of nothing but the breath. Breathe in…. and out.
Breathing is something that we all do every day and take completely for granted. It is one of the most fundamental processes of human existence. CF attacks this fundamental ability in those who suffer from it. Our breath can remind us to think about moments as they pass and what is truly important to us. Our challenges can make us stronger and the challenges of others can bring us together and help us realize the deep meaning of compassion and doing what we can to help one another. In your next breaths, please think about the people you love and the big and little things that make our tomorrows something to look forward to. When you come right down to it, I think, in our own ways and for our own friends and loved ones, those little breaths, that are so easy to take for granted, and those tomorrows, that sometimes seem so far away, are why we’re all here. Thank you to everyone helping in the fight to cure CF. One day soon, I know that we will.
-Doug Wright
Each year, we raise funds to fight CF by participating in the Great Strides Walk. This year, our walk will be in Dana Point, CA on 5/14/2011. To participate and/or contribute, please visit Alexis’s Great Strides Team Site.
Is Realtime Information A Good Thing?
July 13, 2009

Techcruch recently hosted an event about realtime information at their Real-Time Stream CrunchUp. People like Steve Gillmor are writing some very interesting things about it these days. I don’t claim to understand everything they talked about (or even a decent portion of it), because personally, I find keeping up with my own life a full time job and I still have no idea how to keep up with a feed reader, let alone a tweet deck full of smart follows linking to amazing stuff every single day. I am in the camp (if there is a camp) of people that feel like trying to drink from the firehose puts me worse off than if I just pick up what hits me in the head as information flies by? I don’t know how the others do it, but something tells me that most of them are either analysts or journalists and that they are making some of us feel like it’s actually possible to keep up with this stuff in your spare time, when in reality it’s all they are doing (and it’s their job)!
In addition to being “information flow challenged”, I’ve been thinking about attention management and incoming streams of information quite a bit for a couple of years now, so I have some opinions about it. Some people are talking about tools to make it easier to get realtime information and sometimes this is likened to feeding an addiction. So most people agree that a constant inflow of info can be addictive, but there are disagreements as to whether this hurts or helps productivity. The question may be moot because whether it’s bad or good for yesterday’s productivity, we might be missing the boat if we don’t accept its necessity for today’s productivity. In other words, even it if makes us slower at handling yesterday’s type of work, our value in the businesses in which we work might be becoming interwoven into the constant realtime flow of information.
I tend to feel that being too interrupt-driven can lower productivity, but I don’t think that a tool in this area has to amplify that human weakness. I think that there’s an argument that we need to process the incoming data in some way or risk being irrelevant and not having critical information. At the same time, I don’t think I’m the only one who feels he can’t continue to check everything at the rate at which it is flowing. At some point, we’ll have to pop up a level of abstraction.
If there was a tool to help us process all of this information and still remain sane, what would it look like?
Here’s an example from our sound processing hardware (in our brains). There are millions of sounds happening every day around us. Our brain subconsciously processes most of it and packages sounds into bigger chunks (e.g. these 15 sounds = my wife asking me what I’m thinking about while I zone out at a restaurant, these 20 microsounds = the sound of my car stalling, or these 35 microsounds = the sound of my 2 year old starting to lose her balance and fall). In all of those examples, there are hundreds of other sounds happening at the same time and there are neurological statistical models going on that start to recognize patterns and gauge probabilities that certain sounds mean certain things or belong together. We are more attuned to some sound patterns than others because of their special meaning to us (e.g. when my coffee pot at home is done it has a special beep that I can hear for miles even when my kids are screaming and 3 TVs are on
). Basically, the things we hear that catch our attention are actually composed of thousands of tiny individual sounds and must be separated from even more thousands of sounds that aren’t a part of the patterns we are recognizing. If we had to consiously process all of the sounds, we would not be able to get anything else done and would frequently miss patterns. There is no way that I can even explain how I know that a certain small set of sounds means a foul ball is heading right toward me at a little league game. Yet, I turn around and dodge or even catch the ball. This is amazing when you think about it, but we take this for granted because it’s built into how our brains deal with ridiculously complex incoming realtime information and keep us from things like getting hit in the head with baseballs. This whole domain is an example of abstracting the fire hose of auditory data. Humans had to evolve so that consciously, we are interrupt driven, but the interrupts are aggregated and filtered by lower-level processes that we rely on. They are not always perfect – sometimes there are false positives and false negatives, but the trade-off is that we can actually function in the real world instead of getting bogged down in processing all of the microsounds consciously.
But overall, we’ve had to make this deal to function in reality. And millions of iterations (i.e. brain evolution) has shown that this strategy is more effective than processing all of the lower-level data.
I tend to believe that the fire hose of digital information will be unmanageable by human capabilities very soon and that it will require intelligent agent assistance. This is a new kind of data that we have to pay attention to in order to survive and thrive and we can’t rely on physical evolution to solve the problem of course because the time scale has shortened and we’ve started to evolve so much via our own external technology. I know that many people don’t like the idea of a computer filtering the incoming information for them, but I tend to feel this is inevitable at some level as algorithms improve. Imagine that you check every incoming tweet, IM, and email and 25 blogs, stocks, and FB. Even if you are really interrupt-driven and check all of this, you’ve made a decision that the other million inputs you could argue might be valuable need to be ignored, or at least processed much less rigorously. Why not have a really great agent (like a super smart personal assistant) who can occasionally realize that you are reading or writing something that is very relevant to a blog post you never would’ve read otherwise and alert you to the relevant bits? Or it can notice that you’re driving by one of your favorite stores and let you know that something you need is on sale.
I think that what this means is that we have to evolve our external info processing along similar lines as we have evolved our internal info processing.
IMO, there are thousands of ways that I think some form of software can help filter and emphasize parts of the incoming event stream based on a (still young, but constantly improving) understanding of your profile, traits, habits, and context.
At least I hope so, because otherwise people like me who can’t process this much incoming information will get left behind! I don’t think I’m alone, so please let me know if you can relate…
Glass Engine Faceted Browsing Interface
January 7, 2009

IBM Glass Engine
On Steve Rosenberg’s recommendation, I’ve been reading the book Designing Interactions by Bill Moggridge. It is a great history and exploration of interaction design and highly recommended. Last night, I read a section about a web application that I found particularly interesting. Moggridge was discussing an application for browsing the music of Philip Glass called Glass Engine. Basically, it is a faceted browsing application – it allows you to browse the music catalog of the composer. It is different than conventional search because you can’t put together queries that don’t return any results. I’ve been thinking about faceted browsing a lot and I think this interface is fascinating. It’s java-based (probably would be flash if it were done again today), and I found that the music was loading frustratingly slowly, but you should be able to experiment with it enough to get a sense for the idea. I think it’s very cool and I love that I can get a sense for, let’s say, how many ‘joyful’ pieces Glass composed in between 1980 and 1990. Moggridge also discusses how the designers showed other companies how it could be used for other purposes (like browsing sleeping bags by weight, temperature rating, cost, etc.) Could something like this really apply to commercial or business software problems? Is it too big and more of an “art” project?
Is Facebook My New Outlook?
January 7, 2009

Questions: Are social networking apps better for all kinds of communication (friends, family, even co-workers) than email? Are there inherent limitations and problems with email that social networking apps don’t have? Are there new opportunities afforded by social networking applications that can change the way that we live, play, and work that can help us have more fun, stay in touch better all the time, get more done, blend work and play, and have less stress and more happiness in our lives? Maybe our tools, toys, and culture are changing in a way that demands a new approach to communication? Is email dumb? Is email dead? Is Facebook just a toy and a waste of time, or will it and other tools like it eventually replace and extend much of what we use Outlook for today?
For various reasons, but mostly because of my day job at a big software company, I think a lot about how we communicate using tools like email and other internet technologies.
I’m thinking hard right now about how social tools like Facebook affect email and other forms of communication. A lot of people are saying that these kinds of tools are much more effective for most of the communication that we need and want to do and that email just has a very limited and targeted function.
As I said, at lot of this thinking is because I’m interested in the software problem around it, but I’m also thinking about it in relationship to my personal life and how I communicate with my friends and family.
What can you do with email?
Email is great for communicating quickly and asynchronously with one or more people. It allows us to drop quick notes, long letters, catch up with friends, remind our family members about dinner tonight, coordinate events, get notifications, share pictures, music, other files, and links, etc. etc, etc.
What are the limitations of email?
I think the main thing that many people will agree on about email is that we get too much of it. We have emails from friends and professional contacts, notifications from services we use, subscriptions, etc all coming at us from the same firehose. Some say this not a problem with email specifically, but is a more general problem of too much information. Whether you agree with that or not, we are unlikely to get less information anytime soon – the sources and our ability to throw off and receive information are all going up and the trends point to continued expansion. I feel like the limitations may hinge more around the way email works. It just sits there and sucks up huge amounts of time. And it gets worse faster as you get more. Why?
- It takes time to write a good email
- It takes time to read email
- We can only deal with one email at a time
- We have to deal with email in a one-at-a-time way (serially)
- The more behind we get, the bigger the psychological weight is of trying to catch up (check out the trend of declaring “email bankruptcy“
- You only get out what you put in. When you send an email, it (usually) only goes to the people that you send it directly to. You only get information back when they have time to read it and write a response and you are competing for their attention with all of the other emails that they are trying to deal with. If there are opportunities for others you know (or don’t yet know) to help or add information, these will probably be missed unless one of your recipients thinks to forward your message.
- And the biggie: It’s much easier to write email than it is to read and respond. In other words, the effort to fill someone else’s inbox is much lower than the effort to clear your own.
What can you do on social network apps like Facebook?
I’m still new enough to social networking apps that I’m sure I don’t completely understand how to use them and how to get the best value out. But my feeling right now is that you can:
- Track your friends, family and other contacts that you want to communicate with or know about
- Message individuals directly (this is just email and has all of the same limitations, right? Maybe not quite – see below)
- Plan events with individuals and groups
- Share ideas and information indirectly with groups of your friends, family and contacts. This is an important idea because you can share information that people might consume and you can control the size and members of the group that you share with. The information is presented in a way that emphasizes freshness and social proximity. The idea is that the info that people are most likely to need or want is most likely to come to them. Of course there are a lot of tweaks that you can make to your settings, but even the basic settings on Facebook, for example, are pretty good about making this work.
- Share your status, thoughts, current activity, etc (sometimes called microblogging e.g., Twitter)
- Share pictures, files, links, extended thoughts (like this post), etc.
- And of course, you can consume all of this information. You can ideally find the info that you need or want and experience it, respond to it, act on it, etc.
So how do social networking apps replace email?
Even though we have a new toy (new to some of us – actually getting old in terms of internet time) with lots of fun bells and whistles, can’t you do all of the same things with email that you can with social network apps? I’m pretty sure the answer is mostly or completely yes. But you can also do almost all of your cooking and heating with a fire pit – that doesn’t mean there aren’t serious limitations with that approach and much better options out there. It might be that apps like Facebook allow us to deal with social and collaboration information in a way that is more fun, more effective, less stressful, and easier.
Although we think of it as an analog to physical mail, email is just a way of moving bits between people. Those bits serve many different purposes and they have different audiences, lifespans, and implications. Facebook offers most of the functionality of email broken out into richer, more socially meaningful chunks, which are easier and more fun to generate and consume.
So why use email at all? Are there situations where good ol’ email is the best tool for the job? I think these are rare cases, but they exist.
- When you want to correspond professionally with someone who’s not in your regular social group
- When you want to send an extended communication to one person or a small number of people and explicitly not send it to others.
- Most importantly, where you are making a direct request or asking a direct question and you expect action (like some kind of behavior or written response).
Basically it seems to me that email is useful in situations where you would send an old-fashioned letter. Most of the other uses are better served by social tools that break up and broadcast the act of sending links, photos, ideas, events, status updates, thoughts, etc. into socially and temporally oriented streams. These social bits are what we tend to most get us into trouble with email because they don’t belong there in the first place. If my inbox contained only requests and direct communications, it would be much easier to handle. The effort needed to process the email might even be commensurate with the effort needed to create it.
The final nail in the slowly, but surely building coffin for Outlook and other dedicated email clients may be that apps like Facebook have ‘conventional’ email built in as a fallback. In most cases where an email is actually the best way to go, this person will be in your social network, so why not use the direct message function in the social networking app? It may be better just because you have it in one place and your social group is your address book. Maybe eventually we will expect email functionality as good as something like Gmail inside our social networking tools (although we might not need most of it if we only use email for what email is good at).
But wait – there’s more!
Another thing I’m wondering is whether there is fundamentally something new that happens with the Facebook approach. It’s sometimes hard to see this for old guys (like me). Most of us ask how the new tool can do our existing tasks better. Sometimes it’s more than that. Can we deal with the overwhelming amount of information, responsibilities and work and play options of modern life better using apps like Facebook? Can we get back to the close, connected warmth of a social community that was easier in earlier times but still have all the beauty and opportunity that our new tools and new culture provide? Can we stay in touch better than ever with all of the people that matter in our lives? Can we get more work done faster, more effectively and creatively? Maybe our our “catching up” can be more “always caught up”, our projects can be more collaborative, our questions more real-time, our schedules more ad hoc, our options greater and more informed. Can we blend work and play, family, friends, and professional relationships, in a healthy way that allows us to live more in harmony with the fast-paced, information-dense world that we’ve evolved?
What am I smoking and where can you get some? Maybe it’s just still just a really great way to waste 3 hours when you get home or after the kids go to bed.
I’m also aware that a lot of people might think I’m trying to put too much thought into Facebook. I have to admit this possibility, because I tend to put too much thought into a lot of things. Maybe it’s just a place to check out what your friends are up to and upload a couple of pics, and reconnect with people you used to know – stuff like that. I just have a feeling that it is more like a future way of dealing with interactions and information in general. It’s probably not the whole toolkit (like I mentioned, there are still great uses that email is best-suited for and there are many other tools, like blogging, twitter, sms, and even crazy things like face-to-face conversations), but it may be a really big chunk of the toolkit. And it’s not just Facebook. This point has been made before, but there are people trying to bring apps like this into the business world. Even if current business people don’t get it or can’t make the switch, people now in high school and college are growing up with this way of dealing with their world. They will know how to use these tools in very subtle, effective, and powerful ways and they will expect them to be there in the workplace. If they aren’t, some of that generation will build the tools and put them there.
Ultimately, it doesn’t matter if social networking apps “should” replace email, the question is really “Will social networking apps replace email”? I think to a large extent, they will, but I’d really like to know what you think.
UPDATE:
After I wrote this, Scott Rehorn pointed out a fascinating read in this space: “Yahoo! Says the Future Will be Modeled on Facebook“. This post references a New York Times article entitled “Inbox 2.0“. Basically, they both discuss how Google and Yahoo might go the opposite direction from what I’m discussing above and add more social features (including profile pages, news feeds, and prioritization based on the strength of your relationships).
UPDATE 2:
Another great article about this subject: http://www.readwriteweb.com/archives/is_email_in_danger.php
Microsoft Live Mesh Breaks My Display Configuration
January 6, 2009
I was tempted to say that Live Mesh “Meshes” up my display config, but I want my subject to be meaningful
. I just lost 30 minutes troubleshooting a problem where my laptop would no longer change to the dual monitor display I have configured to extend my desktop onto my 24″ Dell monitor. I finally discovered that the culprit was Microsoft Live Mesh!!! I couldn’t believe it. A tool to enable file collaboration and mirroring across devices screws up my display? Seriously??? I’m not sure why, but the app creates another monitor (something like Live Mesh Display Curtain) and shoves it into your monitor config. This screws up the ordinality of the moniitors as they are visible to your system and any saved display preferences that you have are now hosed (in a very obfuscated way).
Uninstalling Live Mesh and restarting solved the problem. I think Live Mesh is some very cool technology, and I’m very interested in playing with it more, but for the rest of the day, I will call this solution “Live Mush” and grimmace in frustration at the mention of it.


