A big highlight of my one-day at the 2012 Nonprofit Technology Conference was getting a chance to meet and chat at length with Chad Norman (@chadnorman) and Melanie Mathos (@melmatho), Blackbaud’s Internet Marketing dude and PR gal, respectively and authors of “101 Social Media Tactics for Nonprofits“.
Here’s a snippet of the wisdom this team had to offer at the conference today:
In March of 2008, we started TuDiabetes because we saw that too many people with diabetes were feeling isolated instead of benefiting from the shared experience they could have by connecting to other people touched by diabetes.
Today, Diabetes Hands Foundation‘s networks allow members to find support locally and globally. Our more than 23,000 members describe the TuDiabetes family as a lifeline, a source of guidance, a sanctuary, and even a college education! We proudly connect advocates, artists, dreamers, thinkers, and people touched by diabetes of all types so that all of us may live a more expansive life with diabetes.
I sit back and reflect on where we were five years ago and where we are now:
- I have learned to stay flexible, both about my diabetes (not pretending to be perfect) and in the way we do things on TuDiabetes and the Diabetes Hands Foundation (adapting to changing circumstances, challenges, and signals along the way).
- I am more hopeful than ever: I have had the opportunity to talk with (and share the conversations on video) with some of the world’s most brilliant minds working to make our lives better and one day have diabetes be a thing of the past.
- I have witnessed the power of social media beyond socializing: seeing how connected people touched by diabetes now feel better understood and more empowered. Who would have imagined this when MySpace was the big thing?
On our fifth birthday, please help us keep going strong in our mission to improve the lives of people living with diabetes worldwide.
If all members of TuDiabetes donate $5, we will raise more than $100,000. Our goal is less ambitious: we are seeking to raise $20,000 before the end of March. So we ask you to give us 5 dollars, or more if you can.
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Thank you for your support! And here’s to another 5 years!
For the full infographic, click on the image or visit:
http://www.e-benchmarksstudy.com/reports/eBenchmarks2012Info.pdf
While the 2012 report is unveiled at the coming NTC 2012 conference in San Francisco, read the 2011 report at:
http://www.e-benchmarksstudy.com/
Created by: Online Graduate Programs
I have apologized so many times about my absence from this blog, that I figured I’d stop doing it and just post whenever I can and… so be it! 
A friend of mine shared a NY Times article tonight with a group of us that brought me out of my blogging withdrawal, a piece titled “Cracking Open the Scientific Process” that questions the process of peer-reviews in medicine and scientific journals.
This article is more than just on to something: it’s in line with the future… mash-ups, crowdsourcing, social sharing, web 2.0… call it what you want… As a matter of fact, in many areas this is not the future but rather the way the present is lived and breathed. But the world of scientific research has been slow to adopt Web 2.0 trends.
The truth is information wants to be free and be shared and it will be! A few years ago who would have given ANY credibility to what a bunch of patients living with a chronic disease had to say about the disease they live with 24/7. Today, the Diabetes Online Community is a force that influences legislation, research, product development, you name it…
Researchers that are closed and not willing to share in their approach may be able to “run” but they can’t hide. Funders are realizing more and more that this kind of “my precious!” type of research has produced very slow progress in many fronts. They are seeing promising trends like the partnership between Innocentive and JDRF around a $100,000 challenge for innovative ways to approach the discovery and development of a glucose-responsive insulin drug as a means to treat insulin-dependent diabetes…
Another great example of this trend can be seen in Boston-based nonprofit T1D Exchange. They developed Glu, a new portal for people with type 1 diabetes, as a means to communicate with the community and to advance diabetes research through surveys and studies. You can read more about this initiative in this recent interview with Jen Block, their Clinical Content Manager.
Could a cure for type 1 emerge from the information voluntarily-shared by people living with type 1 diabetes? Perhaps. Could we as a community (of patients and researchers) learn more from it? You bet! I know we have done so through TuDiabetes and TuAnalyze, with a universe of participants of just over 3,000 people touched by diabetes. Imagine the potential!
So, the flood-gates of information sharing in the scientific world are opening. Who is ready for what is coming?
Disclaimer: Diabetes Hands Foundation (where I serve as President) has collaborated with T1D Exchange in the development of Glu.
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.
1) All email newsletter platforms give you some kind of reporting. We use Constant Contact. Check into the data for your reports. See how your Open Rates and Click Rates compare to market averages. Open rates should be at least somewhere around 10-20% (i.e. this percentage of your messages that didn’t bounce should be opened if the subject line appeals to them). Click rates should be somewhere around 15% too (i.e. this is the percentage of your opened messages that got clicked on, with each click counting towards it).
2) If you are seeing a low Open rate, try playing with the subject line: avoid things like “Our newsletter – August 2011″ in favor of things like “Learn why it pays off to do XYZ”, i.e. include something that will make more people want to open the email, such as including a reference of what they can expect inside. Think action verbs, teasers, things that will prompt an action, not things that are descriptive.
3) If you are seeing a low Click rate, try working with the content. If you have too much content on the newsletter, it will likely not be all read, but it will still likely take you very long to put together. People’s attention span typically won’t go beyond a minute or so per email, so keep it short (test it yourself: read it and see how long it takes you). This is an example of a newsletter (ours) that is intentionally not too long.
4) A very good way to reduce the amount of content you include in a newsletter is to blog about it and LINK to it from the newsletter, instead of including all the content in the newsletter. It will make for an easier-to-skim piece too, which will likely engage people until the end of the newsletter.
5) Another way to reduce the amount of content you include in a newsletter is to send more frequent (though I would recommend against more frequent than weekly) newsletters, with less content each.
What pieces of advice you have for people wanting to improve their newsletters?
A few weeks ago, I was approached by Amy Sample Ward (@amyrsward) and Debra Askanase (@askdebra) to join them, Jess Main (@jessmain) and Vanessa Rhinesmith (@vrhinesmith) in a panel proposal for SXSW Interactive 2012.
Social Media Boundaries: Personal/Personnel Policy
Description
As our networks expand, our profiles get more public, and our work requires a human face, where do we draw the line between personal and professional identities online? How do we maintain those boundaries for our community members? How do we respond to attacks, opportunities, and over-shares online? When does over-sharing hurt the community? When should you share your own personal stories as a manager, or personally reach out to community members? Growing and cultivating an active community also requires that the community manager walk the fine line of personal and professional sharing. Every community manager wonders when and how to professionally cultivate leaders and members to create a thriving community while still being personal. On the reverse side, sometimes community members share too much, which can hurt the health of the community. This panel will address these questions and more from experience in nonprofit and public media sectors.Questions Answered
- How and when is it most appropriate to engage personally with community members, as a community manager?
- Can mixing professional and personal help online communities thrive?
- How to handle oversharing and other inappropriate community member contributions?
- How do you handle personal attacks within communities?
- How do you address personal use in social media policies?
Here are 161 other great proposals in the Greater Good/Charity/Social Good category (yep! it’s pretty competitive…)
We need your support to show SXSW that there is a need for a panel to address the topic of Social Media Boundaries: Personal/Personnel Policy.
Show your OUTRAGE to UNITE for a Healthy Future, Sept. 18 in Central Park, NYC:
https://www.facebook.com/event.php?eid=242368832453916
The presentation I will be doing next Wednesday at the AADE Annual Meeting 2011 in Las Vegas with Hope Warshaw (@HopeWarshaw), Amy Tenderich (@AmyDBMine) from DiabetesMine and David Edelman (@DavidTalk) from Diabetes Daily.