5 Historias de Orgullo, Alegría y Esperanza

Posted on October 6, 2011 by askmanny

5 Historias de Orgullo, Alegría y Esperanza

La presentación que compartimos en SIMO Network (Madrid), el 6 de octubre del 2011:

1) La historia de Melissa:creció con diabetes tipo 1, escuchando que nunca podría ser mamá. Decidida a tener una bebe, logró mejorar su control con todo lo que aprendió en TuDiabetes.org. Tuvo una hermosa bebe y ahora espera un segundo bebe.

2) La historia de Alana: luchando con un tratamiento para diabetes tipo 2 que no le daba resultados, eventualmente aprendió que los adultos también desarrollan una forma de diabetes tipo 1 (también llamada diabetes tipo 1.5 o LADA). Le pidió a su doctor que le hiciera dos pruebas sobre las que aprendió en un grupo de personas con LADA en TuDiabetes.org y salieron positivas. Su doctor aprendió sobre algo que desconocía y pudo prescribirle el tratamiento correcto.

3) La historia de TuAnalyze (EsTuAnálisis en español): esta aplicación ha permitido a los miembros de TuDiabetes.org y EsTuDiabetes.org agregar y compartir opcionalmente la data del control de su diabetes. También incluye un módulo de encuestas el cual estamos próximos a utilizar para ayudar a identificar potenciales problemas con dispositivos o terapias para la diabetes.

4) La historia de un libro de poesía sobre diabetes: No-Sugar Added Poetry recoge poemas escritos por miembros de TuDiabetes.org. Con el patrocinio de Laboratorios Roche, publicamos un volumen que hoy en día permite que las personas que lo leer no se sientan solos en la etapa de su vida con diabetes en que se encuentran.

5) La historia de la Gran Prueba Azul (Big Blue Test): los participantes de la Gran Prueba Azul se miden el azúcar en sangre, ejercitan por 14 o más minutos, se miden el azúcar nuevamente y comparten la experiencia con la comunidad. Normalmente observan una mejora en los niveles de azúcar en sangre de un 20%. Para promover el programa, el patrocinante ofreció una donación de US$0.75 por cada una de las primeras 100,000 vistas que recibió el video promocional que produjimos. Como resultado, donaron $75,000 que fueron distribuidos entre dos ONGs dedicadas al trabajo humanitario entre pacientes con diabetes en el tercer mundo.

Networked: How Much is Too Much?

Posted on June 18, 2011 by askmanny

Update: I was prompted to revisit this post, originally written in June of 2007, after I read a great entry written by Dr. Casado, titled “El Que Segmenta, Gana” (The person who segments, wins).

Also relevant to this topic, the post from earlier in 2011 “10 ways to clean up your Twitter feed“.

Enjoy…

(Design: Mat Giordano)

“Each of us will belong to between 12 and 24 online and/or mobile communities by 2010, and our power to do good things and disrupt old industries will be unique and radiant.” – David Silver, Smart Start-Ups

Reading this phrase recently made me wonder how many communities am I currently a part of? This was the tally I arrived at:

~~Propeller: the Student Portal I manage at Full Sail.~~ (2011 Update: no longer working there)
~~Last.FM: to share the music I listen, so can find… more new music to listen~~ (2011 Update: left it in 2009, when Last.FM sold out)
Twitter: to share what I do in a micro-blog fashion (2011 Update: I share but I also listen a lot… it’s a great tool to stay on top of topics you care about by NOT following a ton of people)
~~Flickr: where I share my photos and comment on friends’ photos~~ (2011 Update: still use it but gradually less and less)
YouTube: I mean, who doesn’t know YouTube? (2011 Update: fairly active member, mostly contributing content and featuring other people’s content)
LinkedIn: for business purposes. (2011 Update: one of the top networking resources I use)
~~Del.icio.us: to share interesting web sites I run into~~ (2011 Update: very rarely use it. Have found Evernote to be just as useful)
~~Digg: allows me to “vote” on links, though at times it gets a little annoying~~ (2011 Update: I still have an account or two, but I almost never go there)
~~MySpace: to listen to music, once in a while~~ (2011 Update: … rings a bell…)
Facebook: starting to warm up to it, but really not something I am on constantly (2011 Update: I have warmed up to it… and use it daily, so do nearly 700 million people around the world)
TuDiabetes: the social network for people touched by diabetes in English that we founded in 2007. Now it has more than 20,000 members.
Amazon.com: people can now comment on other people’s reviews (2011 Update: I continue to occasionally write a review, but I can no longer dedicate much time to it, as I used to a few years ago)
~~Kinzin: a social network for families~~ (2011 Update: no longer a member + they are no longer a family-oriented, but a group-oriented photo-sharing site)

New communities, from June 2007 until June 2011:

EsTuDiabetes: when I wrote this article, we still hadn’t started EsTuDiabetes, our social network for people touched by diabetes in Spanish, now with almost 14,000 members.
Quora: I was VERY excited about it at the beginning of the year. I still think it has potential, but I haven’t found it to be useful for a lot of the things I would use it for. This is to say I have gotten very little value out of it so far.
Yelp: since I moved to the Bay Area, it has become a must-use resource to help choose places to eat, car shops, you name it!
SlideShare: a fantastic resource for sharing and embedding documents and presentations.
UStream: a monthly user in connection with Video-Chat sessions we host on EsTuDiabetes. Now it integrates beautifully into networks on Ning.
Wikipedia: I know it may sound like an odd “community” to list, but behind the troves of articles there is a vibrant community that I have made an effort to contribute to as part of the lessons I learned las year.
Ping: Apple’s half-rear-ended approach to do what LaLa used to do. I basically just “Like” songs once in a while to share them via Twitter here and there…

In 2007, I was a member of 13 communities where I participated in on a regular basis! Fast forward to 2012, the number is… (drumroll)… 13! Not much as changed, huh? I guess the level of engagement has changed and having a clear idea of what each community/network is for, realizing that you get what you put into it.

(from this point on, the post is the same as in 2007)

So, I begin to wonder: how much is too much? After all, all of these online communities do add something to my life in one way or another, don’t they? Or is it possible I may be letting other things pass by the side by spending too much time online?

Social Networking Fatigue and Other Online Ailments
A while back, I was filling up my tank at a nearby gas station and noticed an ad above the pump that said: “Has ‘Pay at the pump’ made us lonelier people?” and went on to invite you to hop in to talk to the cashier once in a while, instead of always using your card to pay outside.

That little message stuck with me. In today’s social media environment, we claim to have more “friends”, yet how many people do we really get to talk to, how many folks could we claim we really know. Not too many: like a comment on this post said, “… having friends is about not just sharing information, but responding uniquely and interacting with said friend.”

Is the solution to unplug ourselves in order to deal with the Social Networking Fatigue that comes from dealing with hundreds of people? Should we go cold turkey and erase our names from the Social Networks of the world (good luck with getting Google to wipe you out!)?

That may be a bit extreme, because we’d loose the real opportunity that these tools give us to connect or reconnect with the people we can’t physically stay in touch with. But, in general, we have lost some of that “touch” that things used to have.

Remember the movie Cars? The whole organic experience that Route 66 used to bring to the lives of travelers was substituted by the speed that the Interstate brought to their trips, getting them quicker to where they were going to, but loosing them the chance to really connect with others during their trip through the Southwest desert.

I don’t think there’s any going to go back to our pre-online times (nor does it make sense), but next time you realize it’s been hours since you last spoke to someone, turn off the monitor, grab your keys and go pump gas somewhere. Just remember to say “Hi!” to the guy inside when you do!

How to get a Wikipedia page for your nonprofit

Posted on September 2, 2010 by askmanny

We tried… and we tried… and we tried… and we finally succeeded!

After more than 3 years, the Diabetes Hands Foundation finally has a Wikipedia page.

Because it was such a painfully long process and because I couldn’t find too many complete articles when I googled “Wikipedia nonprofits“, I decided to share the lessons we learned so that you may not make the same mistakes we made.

Build your reputation and “notability” first

No matter how important you think your work is (and I am sure you are doing amazing things for others in the world), your organization needs to be notable, according to Wikipedia’s guidelines, before it can be Wikipedia-worthy. Quoting:

An organization is generally considered notable if it has been the subject of significant coverage in reliable, independent secondary sources. Trivial or incidental coverage of a subject by secondary sources is not sufficient to establish notability. All content must be verifiable.

Don’t kill the messenger! This set the rules of their site and it’s worked for them so far… though the jury is still out on this one. So, your blog? Not typically a reliable, independent secondary source. A passing mention in an article in your local newspaper? Not notable enough. Does it suck? Ask me! But if you come to think of it, it’s what keeps the site as encyclopedic as it can hope to be.

Make the page about your organization, not your programs

Our earlier attempts at getting a Wikipedia page up were focused on a page about TuDiabetes, the diabetes social network we run in English. As our first program, it got the most visibility at first and it got the most reliable (in our opinion) media coverage earlier. However, TuDiabetes, unlike Facebook or Google, is not a household name (not yet at least!) and it isn’t its own organization: it is a program of the Diabetes Hands Foundation.

The results when we posted a TuDiabetes page on Wikipedia in 2008 were disastrous. But I am going to let a screenshot of the page speak for itself:

Your Wikipedia page should encompass all your work. Not only will this be a more complete depiction of your work: it will also furnish you hopefully with more notable and reliable sources to insert as references in your page.

Let others write about you

This, to me, was one of the most puzzling things about getting a Wikipedia page started (for a nonprofit or any other organization). One of the arguments we heard from Wikipedia in our first attempt to write our own page was that others had to do write about us. It didn’t dawn on me that the this implied other MEDIA (reliable media, that is). It is not a problem for you to write your own page, but you have to make sure the reliable references are there and that you are writing about something bigger than a program you just launched.

Last few tips

It helps to get a copy of a book like Wikipedia: The Missing Manual, but you don’t need it as much these days as you used to back in 2008 when it first came out. Recently, Wikipedia has added new features that make creating and editing articles a lot easier.
Reputation management online is key, so make sure to watch your page. After you log in to Wikipedia, you will see a little star (it’s blank by default) next to the View History link for the page. Click on it (which will turn the star blue) to have your page added to your Watchlist.
No matter how tempted you may feel to “trick” Wikipedia, don’t do it. Don’t waste your time or loose your account’s credibility in the process. Stick to the Wikipedia guidelines and address the concerns they may have about your page when you post it in a timeline fashion. Respect their decision even if you dislike it: this doesn’t mean you are not supposed to talk with them about your questions or ask for a more detailed explanation about a particular decision, but always do so in a respectful way.
Most important of all: getting a Wikipedia page for your nonprofit is not a sprint. In the world of Web 2.0, this is as close to a marathon as it gets. Be patient and do your homework. It will pay off in the long run.

If you have any lessons you have learned from your experience with your Wikipedia page, I would love to hear them.

IF YOU FOUND THIS POST USEFUL, PLEASE CONSIDER MAKING A TAX-DEDUCTIBLE DONATION TO THE DIABETES HANDS FOUNDATION.

Diabetes Social Media Summit 2010: my thoughts

Posted on July 3, 2010 by askmanny

Image map HTML code by: Bernard Farrell

It’s been less than a year since the first Diabetes Social Media Summit took place. A lot of water has passed under the bridge (not even sure if that phrase exists in English, but you get the idea!)

This year, the summit took place in Orlando, book-ended by the ADA Scientific Sessions and the Children With Diabetes Friends for Life conferences. Also, in 2010, the number attendees grew and type 2 diabetes was represented by more bloggers too (Betizuka, Rachel Baumgartel and Bob, among them).

Naturally, getting to see so many great DOC friends in person was the biggest highlight of the event. Some of them, I’d had the honor of meeting in person before. Several, I met for the first time. ALL, it was amazing to see together, because the amazing flow of ideas and passion that takes over the room when you get so many amazing diabetes advocates together in one room is hard to parallel. To give you a feel for the day in images, I embedded a slideshow below that pulls pics submitted by all attendees to a Flickr pool created by Bernard Farrell.

In case you are curious about what Roche presented to us (this probably took about 30 minutes out of a half a day that the summit lasted, to give you perspective), Scott Strumello uploaded the Powerpoint slides we got from them and I have embedded them below:

The high point in the agenda was the participation of ADA and AADE in the summit. ADA brought a representation that included the current ~~President, Richard Bergenstal~~ Chief Scientific & Medical Officer, David M. Kendall (thanks to Riva Greenberg for spotting my booboo ), a board member and representatives from communications, marketing and PR. ADA wanted to listen (they stated so in reply to an invitation from Roche to ask questions to the summit attendees) and I think the dialog that took place will be the starting point for lots of evolution in the way they interact with all diabetes patients in the coming months and years.

The tone of the exchange with AADE was different. We learned quite a bit from them, most importantly perhaps, that they are not the organization that is tasked with certifying diabetes educators. The attendees reiterated the commitment of the diabetes online community to support all efforts necessary to get more patients credentialed in order to support the increasing need for diabetes education in the US.

Dinner closed with a beautiful session where we exchanged best practices. The phrase that stuck with all of us came from Riva Greenberg:

BE BOLD!

So there you have it… my humble take on this year’s summit… because I know that a crowd of people can do so much more and so much better than a single individual, I recommend you mouse over the faces in the photo at the top. They are each linked to their corresponding blog or online community, so you can get a better rounded idea of what the Diabetes Social Media Summit was like this year.

Disclosure:

Roche paid for my travel, meals and hotel expenses in connection to the summit. I stayed longer in Orlando to attend the ADA Scientific Sessions 2010, but Roche paid no expenses related to the rest of my time in Central Florida.

IF YOU FOUND THIS POST USEFUL, PLEASE CONSIDER MAKING A TAX-DEDUCTIBLE DONATION TO THE DIABETES HANDS FOUNDATION.