I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
October 19, 2024, 12:47:55 PM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: News Articles
| | |-+  upcoming magazine article - IHD mentioned at end!
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: upcoming magazine article - IHD mentioned at end!  (Read 3855 times)
okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« on: April 23, 2007, 09:25:04 AM »

Special Report
A Small Circle Of Friends

Virginia Postrel 05.07.07
FORBES MAGAZINE

Some self-help groups save lives, and some just drift apart. What makes a personal network click?

When photography enthusiast Karol Franks had problems with the battery on her Minolta camera, she didn't take it to a repair shop.

Instead, the Pasadena, Calif. mother of four went online for help, posting a question on Renegades (www.network54.com/Forum/261411/), a forum where photographers share advice and critique each other's work. Another member not only explained why her battery kept draining but also encouraged her to post some photos on the forum. Franks became part of the online network.

So when she began thinking about donating a kidney to her ailing daughter Jenna, it was natural for her to seek out similar help online.

She found Livingdonorsonline.org, a volunteer effort started in 2000 by Michael Murphy, a Georgian who had donated a kidney to his sister. Over the past two years, as first Franks and then seven other friends and relatives were ruled out as potential donors, she relied on her online network for information and moral support.

"My family understood very little about what we were going through," says Franks, "but here was a whole group of strangers who would immediately respond to my posts, sharing their experiences and cheering us on." Along with public exchanges on the forum, she corresponded privately with several other parents of teenagers she met online. She volunteered as a moderator, screening out the Viagra spam. And she met a woman from Ohio, who came looking for answers after she was ruled out as a donor just three days before a scheduled transplant. Franks was one of the people who answered her queries. When the Ohio woman searched the forum for someone else she might help, she found out about Jenna and volunteered as her donor. As Franks e-mailed me in late February, "Now my daughter is six weeks post-transplant--from a stranger in Ohio that we would have never met if it weren't for LDO!"

Franks is still an active member of Renegades, the photography forum. But most of her recent posts are about Jenna, now 21, rather than camera equipment. Franks has posted photos of Jenna, her living donor and her relieved parents, and forum members responded with good wishes.

Online forums are a virtual version of a very old institution: the self-help network, which dates back to bands of prehistoric hunters stalking prey on the African savannahs. Defined broadly, self-help networks include alumni connections and ethnic credit clubs, interlocking compensation committees and Alcoholics Anonymous, trade associations and investment clubs, mafias and condo associations. What makes a self-help network distinctive is its instrumental purpose: to help members find jobs, lose weight, improve business, fight addiction, resettle in a new country, cope with an illness or invest in the stock market. A self-help network isn't primarily a group of friends. It exists for a specific reason.

While self-help networks differ widely, they all face similar issues: How exclusive or open can the group be and still achieve its goals? How can it sustain participation over time? Who will take responsibility for maintaining group activities? And how focused on its instrumental purpose, as opposed to social connections or other concerns, should the network be?

To social scientists, a network (self-help or otherwise) usually implies a system that includes both subgroups in which everyone knows everyone else and "bridging ties," where an individual is connected to others outside those smaller circles. In an influential 1973 article, "The Strength of Weak Ties," sociologist Mark Granovetter, now a professor at Stanford, demonstrated that while job hunters use social connections to find work, they don't use close friends. Rather, survey respondents said they found jobs through acquaintances--old college friends, former colleagues, people they saw only occasionally or just happened to run into at the right moment. New information, about jobs or anything else, rarely comes from your close friends because they tend to know the same things and people you do. One reason online forums are so valuable to participants like Franks is that they connect lots of people who wouldn't otherwise know one another.

Bridging ties keep a network from becoming a clique, but they can't build the trust and deep knowledge essential to many self-help efforts. The most effective networks reach a sort of "bliss point." They're open enough to bring in new ideas and closed enough to foster trust and intimate knowledge. "You actually need some of that cliquey-ness," says Brian Uzzi, an economic sociologist at the Kellogg School of Management.

If it becomes too open, a self-help network can disintegrate. Through the 1990s Stephen B. Garner, a Portland, Ore. marketing consultant, served as the volunteer coordinator for a business network called Resource Focus Group. Once a month members met for breakfast to hear a presentation by a company facing a strategic issue, such as how to penetrate a new market or whether to sell the business. Members asked questions and discussed how the company should proceed. Once a year presenters reported on what had happened since their meetings. By bringing in outside presenters, the group ensured a constant flow of new information. "It was really just a great learning experience with some very intelligent people," says Garner. Members could also propose new members, subject to a vote by the group.

When Garner moved to Spain for a year, however, his successor took a more laissez-faire approach, making the group less exclusive. "People would just show up, and they'd be new members. There'd be no introduction. There'd be no qualification," says Garner. As meetings became more impersonal and less fun, longtime members started drifting away. The group eventually dissolved.

To remain useful, self-help networks have to police their members, whether that means removing spam from the Living Donors Online message boards or screening members. That often requires an informal coordinator like Garner who not only organizes network activities and enforces the rules but stakes his own reputation on picking the right members.

In her new book, Survival of the Knitted: Immigrant Social Networks in a Stratified World (Stanford University Press, 2007), Rutgers sociologist Vilna Francine Bashi examines the networks that bring West Indian immigrants to New York and London and help them find jobs and housing. These networks depend on people Bashi refers to as "hubs," usually pioneer immigrants with strong ties to their homelands. Hubs decide whom to bring over, put the new migrants up in their homes until they've saved enough money for their own apartments and refer them to jobs. They are selective as, person by person, they build a new community. Bashi asked one woman how she decided which of her two sisters to send for: "She explained, 'You send for the one you like best.'" Another woman learned of teaching jobs in London and picked other teachers to go with her based on their commitment to live a Christian life.

These choices aren't just a matter of taste. When a hub refers a newcomer to an employer, that person's job performance affects the prospects of the entire network. "At stake is the employer's willingness to take future recommendations from the hub and perhaps the hub's own ability to recruit and train new employees," writes Bashi. After a pattern of job success, employers come to trust the referring hub, often ceding responsibility for filling new positions.

As a result, the immigrant network may come to control a niche in the local economy, leading employers to generalize about the ethnic group as a whole. "Instead of 'Taran always knows the best domestics and nurse's aides,' employers believe that 'West Indians are great domestics,'" writes Bashi, "or that they 'work well in hospital settings.'"

Motivation is, in fact, one of the great benefits of self-help networks, a positive example of peer pressure. Groups like aa or Weight Watchers are, of course, all about motivation. But even networks that emphasize other benefits often provide much of their value through peer pressure.

Remodeling contractors join Business Networks mostly to learn more about how others in the industry operate. Members, who come from different parts of the country and so don't compete directly with each other, share confidential financial data and so get a realistic picture of other businesses' profits and practices. "When somebody tells you something, looking at their financials, you know if they're blowing smoke up your skirt," says Business Networks founder and chief executive, Les Cunningham.

The group provides not just information but motivation. At twice-annual meetings, members agree to specific goals for their businesses, from delegating more responsibilities to adopting certain profit margins in calculating their job bids. A member who doesn't achieve the goals has to kick $100 into the group's social kitty, wear a clown wig or "polyester cranberry Republican pants" for the three days of the meeting. The penalty is small enough not to really hurt but public enough to be embarrassing. Says Cunningham, "They'd rather spit on their grave than pay that $100."

Even profit-oriented businesspeople, it seems, need peer pressure to take difficult steps they know will improve their business. Over time the value of accountability seems to grow. Roughly 60% of Business Networks members said it was an important factor in deciding to join, while more than 90% ranked it important in continuing their membership, according to a 2002 survey by economic sociologists Ezra Zuckerman of MIT's Sloan School of Management and Stoyan V. Sgourev of the Essec Business School in Paris.

Members typically stay in Business Networks about five years. After a while the cost in membership dues ($3,500 a year), travel expenses and time away from work becomes greater than the value of the learning and motivation. "There does seem to be a life cycle in at least some [industry peer networks], where the most learning is at the beginning, and then it becomes increasingly difficult to say that they're learning something new," says Zuckerman. Once the group has fulfilled its purpose, members drift away, often in bunches.

"One leaves, then another one a week later and yet another one in a week or two," says Sgourev, who has written a paper on the phenomenon. They're "just like penguins standing together on the edge of an ice floe and jumping in the water en masse to avoid becoming food to a predator," only in this case they wait for a particularly influential member to decide the group is no longer worth the trouble.

Short of mafia-style enforcement, most self-help groups have to rely on self-interest, broadly construed, to maintain their members' interest. Those that survive over the long term usually do so not because of their practical advantages, though those may be considerable, but because of the friendships they create. "What keeps people in more than they anticipated is essentially the ties that are formed," says Zuckerman. Groups like Business Networks may be "selling essentially hard-nosed business considerations--you're going to go in, and you're going to increase your bottom line." But once members have gotten those initial benefits, they stick around because, in Cunningham's words, they've become "best buds for life."

Karol Franks would understand. Even though she has already found an organ donor for her daughter, she still contributes to the Living Donors Online forum and another group called Ihatedialysis.com. "I feel like now I have this responsibility to other dialysis patients," she says. "I feel like my advocacy can't just end here with Jenna."

Besides, she's become close to a number of other members at Living Donors Online. "I want to know how they come out. … I just want to know the end of the story."

Virginia Postrel (www.dynamist.com) is a contributing editor for the Atlantic Monthly and the author of The Substance of Style and The Future and Its Enemies.

« Last Edit: April 23, 2007, 09:28:08 AM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
livecam
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1182


World's Best Beach..Lanikai..Oahu, Hawaii

« Reply #1 on: April 23, 2007, 09:39:04 AM »

Somehow I think most of us know that Karol Franks lady.  Great article!
Logged
Hawkeye
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1356


« Reply #2 on: April 23, 2007, 10:21:10 AM »

Karol Franks and a daughter named Jenna....nope doesn't ring a bell at all.... ;D

Great Article.
Logged

It's not easy being green.
goofynina
Member for Life
******
Offline Offline

Gender: Female
Posts: 6429


He is the love of my life......

« Reply #3 on: April 23, 2007, 10:43:40 AM »

WOAH!!  Now wait gosh darn pickin' minute here,  you mean to tell me (us) that you've been seeing another forum?  How could you?  I thought all this time we were the one, the only one that has been graced by your thoughtfulness and your kind words, and you mean to tell me all the while i have been wrong?  Oh, the pain, THE PAIN I TELL YA!!!  :P  Well, i guess we can share, if we absolutely have to.   But i bet you any money they dont appreciate you as much as we do. ;)   (but i know they do appreciate you)  ::)
Logged

....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Sluff
Member for Life
******
Offline Offline

Gender: Male
Posts: 43869


« Reply #4 on: April 23, 2007, 03:09:24 PM »

Okarol I hope that is a life long mission. You have done a lot of good here at IHD. I hope this union never ends. :grouphug;
Logged
MyssAnne
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1776


« Reply #5 on: April 23, 2007, 03:38:45 PM »

What a wonderful article! I am so glad you were recognized for your well, what shall we calll it? Deeds? Actions? Presence? Maybe all that and more. As I participate in this forum, I
appreciate even more what you have done already for this forum. (Of course, WE love you
MORE than the other forum does!!!)  I'm very pleased for you. Congratulations. :beer1;
Logged
George Jung
Sr. Member
****
Offline Offline

Gender: Female
Posts: 892


« Reply #6 on: April 23, 2007, 03:52:21 PM »

Thank you Karol.
Logged
okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #7 on: April 24, 2007, 06:09:35 PM »

WOAH!!  Now wait gosh darn pickin' minute here,  you mean to tell me (us) that you've been seeing another forum?  How could you?  I thought all this time we were the one, the only one that has been graced by your thoughtfulness and your kind words, and you mean to tell me all the while i have been wrong?  Oh, the pain, THE PAIN I TELL YA!!!  :P  Well, i guess we can share, if we absolutely have to.   But i bet you any money they dont appreciate you as much as we do. ;)   (but i know they do appreciate you)  ::)

But my heart is here.  :)
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
goofynina
Member for Life
******
Offline Offline

Gender: Female
Posts: 6429


He is the love of my life......

« Reply #8 on: April 24, 2007, 09:23:18 PM »

Awwww, Okarol, that was an awesome reply,  :clap; thank you  :cuddle;
Logged

....and i think to myself, what a wonderful world....

www.kidneyoogle.com
anja
Sr. Member
****
Offline Offline

Gender: Female
Posts: 708


« Reply #9 on: April 24, 2007, 09:42:32 PM »

 :clap;    Kudos, Karol for all you have done and continue to do for our community.  You are much appreciated , hope you know that!   Thanks so much!
Logged
angela515
Elite Member
*****
Offline Offline

Gender: Female
Posts: 3385


i am awesome.

« Reply #10 on: June 08, 2007, 03:00:19 PM »

Yay Karol... great article! :)
Logged

Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
donnia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1012


me and my donor Joyce

« Reply #11 on: October 10, 2007, 05:55:49 AM »

Wonderful Karol!  You are such an inspiration!
Logged

Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
Amanda From OZ
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1038


« Reply #12 on: October 10, 2007, 06:30:07 AM »

Great Article Karol....  Your the best.  :-*

Amanda
xxoo
Logged
Phillip_20
Newbie
*
Offline Offline

Gender: Male
Posts: 43

« Reply #13 on: April 07, 2008, 09:44:15 AM »

Great article!  :2thumbsup;
Logged
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!