FI Space

NTEN, Chris Brogan and Guys with Beards

Have you heard of NTEN? Simply put they are THE membership organization of nonprofit professionals who put technology to use for their causes. And one of my favorite organizations on the planet. Mainly because they help us run the local Austin 501 Tech Club and they get it. How do I know they get it? Well they ask people like Chris Brogan to guest lecture on their webinars. Check out the latest one that Chris did here.

Of course my tips are not as a great but Beth Kanter encouraged me to do this so enjoy!

How Moms Dealing with Cancer Embrace Community

I apologize for this late Mother's day post.  You can cut me some slack because I'm a volunteer who happens to be a mother. {digs through purse} 

Aren't they adorable?

Thanks for indulging me. They are 11, 8, and 2 - all geniuses of course! 

I didn't post last week because two out of three had a stomach virus. I was sick too, but moms don't get sick days.  It only took 48 hours for the virus to run its course, just long enough for me to get my pity party started. 

Then it hit me - Moms get cancer, and they are sick for months, maybe years on end.

A few years ago, my 38 year old friend with two elementary-aged girls died from cancer.  I dropped off casseroles and sent cards. I'm ashamed to admit that I helped from a safe distance, fearful of becoming too intimately acquainted with her illness.

As a volunteer for SharingHope.tv , I still "help from a distance," but thanks to social media tools and the bravery of cancer bloggers, I am more intimately acquainted with cancer and the debilitating exhaustion that can accompany it.  As a result, last week's personal pity party was over almost as quickly as it started.  In fact, I switched to counting my blessings.

What's remarkable is that the moms I've encountered in the on-line cancer community are counting their blessings too. Not only are they laboring while exponentially sick and tired, but they are reaching out to help and inspire others. 

I don't know anything about the woman featured in a video I came across on You Tube, but I admire her mothering style.  She knew cancer treatments would cause her to go bald and possibly scare her young daughter. Instead of letting cancer dictate the terms of her hair loss, she chose to involve her preschooler in a "haircut." Watch the video to see how the child responds to her mother's show of strength.  Here is the link: http://www.youtube.com/watch?v=AHGJZ_uLxwY 

I also stumbled upon kimmiecares.com.  Kim Goebel never had children, but while dealing with her own cancer at the age of 43, she wanted to do something to help the parents she met.  She conceived a doll with removable hair as a tool to help bring parents and children together around the topic of cancer.  Though Kim passed away, her kimmicares doll still speaks her message.

Then there are the mothers who parent children with cancer. Thomas Bickle is a two year old boy fighting a brain tumor.  His mom, Sarah, blogs about life caring for him.  She expresses gratitude for finding the right dose of pain medication that gives Thomas enough energy to play with his Legos.  She also speaks out about the dysfunctions of the health care system in the hopes that someone will listen and champion change.

One of the pitfalls of motherhood is how easy it is to become so consumed with the needs of your own family that you forget the world beyond your picket fence. I want to thank the three women I just mentioned, and countless others, for gracefully demonstrating how to grow a family embrace into a community embrace.

Happy Mother's day, belated.

I'm back and our IT Dept doesn't suck

So I just got back from vacation and yes it was awesome. Yes you can email me for photos. And yes I didn't check email 2 for two weeks. But the cool thing when I got back was our new iTunes policy. You see most non-profits when you talk to them about IT they wince, or they say "What IT Dept?". When your running a non-profit sometimes IT is a luxury you can't afford. Or if you are a larger org like we are sometimes you get an IT dept that rules with an iron fist. I know that as a Web Developer I have bumped heads with IT several times before, but not this time. In fact it was a refreshing change!

We noticed back in April that the iTunes store was blocked at work, and that we couldn't download any podcasts as well. Obviously some port was blocked on our firewall. Now we produce at least two different podcasts for the organization and advertise them to employees and volunteers so we kinda needed that to be open for people to download the podcasts. So we emailed a plea to our corporate IT dept and then hunkered down for a fight. But guess what? No fight at all. They asked us why we needed the port open. We explained. They opened it and then complimented us on the podcasts we were doing, AND wondered how they could help! How cool is that?

The lesson here is beyond ask and you shall receive. The lesson is that sometimes  the IT dept really is on our side. No matter how big or small your  non-profit.

What's the answer?

Anybody know why when you "embed" a flash video in a web site--like the video report below or other videos on this blog, the still image in the embedded picture is just a random frame from the first seconds of the video rather than the first frame of the recording? Drivin' me nuts.

Dr. Watson, I Presume...

The rapid advance of genomics in recent years involves one of the American Cancer Society's early research recipients and Nobel Laureate. We're also in the early phases of a new era in personal  and social use of genetics.

The Instant-On Green Computer

We've had resistors, capacitors, and inductors as the three fundamental elements in circuits. Now we may finally have the physical manifestation of the "memristor," originally described back in 1971 by engineering student Leon Chua, thanks to nanotechnology and HP Labs. Basically, it's a resistor with memory. As you might guess, this could lead to RAM that is non-volatile, and could power back on in the exact state it was when it was powered off. It could also mean much more energy efficient computers, since memory could remember it's state without power. And these are just two of the major changes it could bring about...

http://blog.wired.com/gadgets/2008/04/scientists-prov.html

Social Networks and Fundraising

Non Profit organizations are being drawn towards large social networking sites at a rapid pace, due in large part to the density of potential volunteers. One of the organizations looking to recruit new donors is the International Humanitarian Foundation. The group recently launched the $10/1000 campaign focusing on attracting 1000 new donors at $10. "Social networking has the power to effect change in our world. We can reach the people we know will be interested in our work in a viral manner," said IHF President Amish Parashar.

Part of the allure continues to be massive scope and size of these spaces, but no one has really tried to quantify the quality for specific actions. There have been no research studies that I have seen that help fund raisers better understand conversion rates in social networks, and ROI for each fund raised dollar. IHF suspects tha the overwhelming majority of new donors will be 1 to 3 degrees away from existing IHF volunteer, which speaks to the assumption that the web technology allows for stronger reach across weaker ties but we still do not know how strong or how far that reach can go.

Non Profit organizations are being drawn towards large social networking sites at a rapid pace, due in large part to the density of potential volunteers. One of the organizations looking to recruit new donors is the International Humanitarian Foundation. The group recently launched the $10/1000 campaign focusing on attracting 1000 new donors at $10. "Social networking has the power to effect change in our world. We can reach the people we know will be interested in our work in a viral manner," said IHF President Amish Parashar.

Part of the allure continues to be massive scope and size of these spaces, but no one has really tried to quantify the quality for specific actions. There have been no research studies that I have seen that help fund raisers better understand conversion rates in social networks, and ROI for each fund raised dollar. IHF suspects tha the overwhelming majority of new donors will be 1 to 3 degrees away from existing IHF volunteer, which speaks to the assumption that the web technology allows for stronger reach across weaker ties but we still do not know how strong or how far that reach can go.

More On Twitter

Mike Santoro, over at Perfect Pitch has some great links to posts about Twitter, the microblogging Web site.

If you don't know what Twitter is, check out the links he gives.

Responding to popular demand (well, okay, one demand:-) here's a link to my Twitter home page. Feel free to follow me.

New Medical Treatment Trend?

Dr. Len Lichtenfeld, the American Cancer Society's Deputy Chief Medical Officer blogs about what could be a new trend in medical care called Patient-Centered Medical Home.

Dr. Len says:

If done right, this effort has the potential to vastly improve the care we provide our patients, emphasizing prevention as well as more effective, evidence-based primary care medicine when someone develops an illness or a chronic medical condition such as diabetes or heart disease.

Another Way To Fight Obesity?

What stories do your communities tell?

I have written to some of you before about my friend Sarah’s son Thomas.  He is two, and has a brain tumor that has now spread to his spine.  You can read details in her blog.

So began an email I received a couple of months ago from an acquaintance determined to help raise funds for friends so they could afford to stay by the bedside of their dying toddler. My friend sent the heartfelt email to everyone in her address book, asking for small donations. Within 3 days, she raised over $1000.

My friend's email led me directly to Paypal button on the family’s blog, which chronicles the challenges of parenting a two-year-old with cancer. In a recent post, Thomas’ mom writes of having to constantly re-explain her situation to people she meets. She sums her experience up in five words: “Cancer. Quit job. Expensive. Sad."

A couple of days ago, a Twitter friend pointed me to another cancer blog, 4tricia.com.  Tricia is a young mom with an aggressive form of breast cancer, and underwent a double mastectomy only 9 days after her diagnosis.   Her brother created the site to help keep family and friends up to date about Tricia’s condition, and to help raise money for Tricia’s expensive care.  The site features a billboard where visitors can purchase pixels do display a logo linking to their blog or business.  The family donates 25 percent of the pixel purchase goes to American cancer Society and Frozen Pea Fund.

Recently, Randall Moss discussed one man non-profits and the disadvantages of duplicated of efforts resulting from people doing the same work for the same cause across multiple organizations.  With social media, it’s not just one man non-profits on the rise, but one-man/one-woman causes. How do blogs like Tricia’s and Sarah’s change the non-profit landscape?   No doubt, they add deeply personal dimensions to causes like cancer, increasing awareness and empathy among readers who stumble upon their writings.  Should non-profits reach out to these vocal members of their community?  In what ways?  How do you find them?  What can organizations learn from individual social media efforts?

As story-telling proliferates through social media, those organizations and individuals best able to convey the compelling stories of their communities have a clear fund-raising advantage.  So many non-profits serve communities that lack the technology and education required for blogging and other social media outreach.  Even in the communities where many individuals have access to technology, there will be those that do not.  As a result, it is critical for organizations to help level the playing field by finding ways to give voice to the voiceless in their communities.

How are you helping the people you serve tell their stories?   

CPS-3 Needs You

The weekend of May 2-3 across the U.S there will be 13 Relays For Life with an extra special component. These relays will offer a chance for people to volunteer to participate in our third cancer prevention study. CPS-3 is looking for 500,000 volunteers between the ages of 30 and 65 who have never had cancer.  Here' s how our  Web site describes it:

The purpose of CPS-3 is to better understand the lifestyle, behavioral, environmental and genetic factors that cause or prevent cancer and to ultimately eliminate cancer as a major health problem for this and future generations.

Study participants will be asked to give a blood sample and fill out a questionnaire. You'll then reserve a questionnaire about once a year asking us to update your lifestyle information.

This weekend CPS-3 enrollment will be at the following Relays:
Bakersfield, CA
Long Beach, CA (Cal State U)
San Gorgonio Pass Communities
Tracy, CA
Bertram, FL
Milton, FL
Bibb (Macon) GA
Henry (McDonough) GA
Curry County, NM
Manati, Puerto Rico
Brazos/College Station, TX
Lubbock, TX

Buda/Kyle, TX

Enrollments are only taken for an hour or more at each relay, so click here to find a list of all Relay events involved in CPS-3 enrollment. The specific times are listed.

In addition to the 13 relays happening this weekend, there are many others still to come. If there's not one near you this weekend, perhaps there's one coming to your community soon.

Here's a 5:13 video containing more information about CPS-3. Watch it, then tell all your friends, neighbors, and family members between the ages of 30 and 65 to come out and sign up. This is another way for them to get involved in finding ways to prevent cancer.

 

If you have a blog, please consider going  to SharingHope.tv and embed the video into a blog post of your own. We'd appreciate you spreading the word. Thanks.

You tell them social media can change the world. Now show them how.

When you get a taste of the power of social media, your eyes grow wide and you become an Evangelist. The problem is, when you finally assume the famous Connie Reece Twitter prayer pose, the rest of the world responds with dirty looks.

Now, your reluctant old media friends have a compelling reason to jump into the fishbowl with you. Try as we might, Twitter is not the diving board.  For busy people not swimming in social networks, there is another option. What if you could educate family and friends about the transformative power of social media using just a few minutes of their time, and help a great cause in the process?

The fledgling sharinghope.tv site needs content. You, my beloved socmed friends, have the talent and the tools to help this site take flight by contributing to the cancer dialog. You don’t have to be a survivor - I haven't met a single person whose life has not been touched in some way by cancer. Pull out your Flip camera or cell phone and just talk about those experiences. Turn your lenses on family and friends willing to share what they know about cancer. Show them how your toys accelerate conversations around a truly meaningful topic. Then, upload those efforts to sharinghope.tv.

As you can see, I am not a video-blogger. GaryVee is in no danger of losing his day job to me. That's not the point. With topics like cancer or the dangers of smoking, everyone has a story to tell, even camera-shy me.

If you believe social media can change the world, time to put your money where your big blogging mouths reside (I mean this with the utmost of admiration) and lend a lip to sharinghope. I was at SXSW Interactive – I know there is no shortage of talkers among you, and you’re always pointing those electronic thingies at someone!  How have you or your loved ones been affected by cancer? Please don’t comment here in writing - comment in words the cancer community can actually hear on Sharinghope.tv.

Looking forward to the <ahem> competition.  Dave, you owe me for this one:

Some Follow up Tweeting

We have been getting a great response on our post about "What the h$%^ is twitter". Wanted to update you on a few more non-profits on the list:

Leukemia
Salvation Army
American Cancer Society
Heart Association

Karen Rose, who is running our twitter account says "we are on twitter because of the great awareness it generates and we want reach out to this community like we do all the other communities we reach". Of course this all started when I was shocked to see this:

One Man Non Profits - V Getting the Momentum

Any good sports fan or coach will tell you that the key to any game is getting and keeping the momentum. Same is true in business, and social causes. One of the reasons large philanthropies are large is that they have found ways and programs to build and maintain momentum. Nothing is perpetual and maintaining forward progress should be part of any organizations mission.

In terms of one man non profits how much momentum can one person generate. Throughout history individuals indeed have changed the world. Web based tools in this day and age are allowing entrepreneurial philanthropists to gather potential energy and release it once a critical mas  has been reached. The Point is one such system. The Point is a new way of thinking about collective action. People need a way to know where their participation adds the most value. That’s what The Point offers—an environment where people are only asked to participate when their action can be combined with others to create a solution.

Utilizing online systems to gauge the potential energy for any social cause could be a valuable tool for emerging philanthropic activities. More precisely systems like the point can help identify if there is a gap with sufficient interest to create an entity to serve it. Established organizations should use this kind of a systematic approach to fill those gaps. In both cases it reduces cost as an entry barrier as well as helps set potential expectations before a program even gets underway.