3 Secret Weapons for Nonprofits

As you may know by now, the past seven years I have been President of Diabetes Hands Foundation, a Berkeley-based nonprofit that aims to connect, empower, and mobilize people touched by diabetes for positive change, so that nobody living with diabetes may feel alone.

In the process of growing the organization, we have encountered a number of valuable tools and resources that have been instrumental in support of our mission. I wanted to share three of them that I have been meaning to write about for some time:

1) Techsoup
Nonprofits need software. But software can come in at a steep price, specially packages like Adobe PhotoShop and others that are important as part of creating and maintaining your nonprofit brand. Enter Techsoup!

They aim to connect nonprofits, charities, or public libraries with tech products and services, plus learning resources to make informed decisions about technology. Their free resources are available to all users. Once registered and qualified with TechSoup, nonprofits and libraries can access donated and discounted products and services from partners like Microsoft, Adobe, Cisco, Intuit, and Symantec.

2) Nonprofits Insurance Alliance Group
Nonprofits (as any other business) also need insurance. The Nonprofit Insurance Alliance Group provides a stable source of liability insurance tailored to the specialized needs of the nonprofit sector, and assist their members with programs, tools and training that minimize their risk, protect their clients, employees and volunteers. Not only are they tailored for nonprofits: they are more affordable than other alternatives.

3) Hispanic Foundation of Silicon Valley
One of their programs is the Latino Board Leadership Academy, which is a bootcamp of sorts, that trains Hispanic executives in Silicon Valley to become the best possible nonprofit board members. We came to their 2014 “Nonprofit Match Night” and loved it. Indeed, we recruited one of our current board members that night! They interviewed me about my impressions on the event:

An eye opening experience at @CWDiabetes!

Blog post first posted on the DHF blog, Nov 19, 2014.

Last month, I had one of the most amazing experiences I have had with technology since I have been living with diabetes. It happened at the Focus On Technology conference organized by Children With Diabetes in Los Angeles (the first time they do this mini-Friends For Life in the west coast), which was a resounding success with 300+ attendees. My experience wasn’t with CGMs, insulin pumps, or some of the other devices available today for day-to-day diabetes management. I had the opportunity to have the most in-depth retinal screening I have ever had, conducted by a group of students of Dr. Ben Szirth (a true legend in diabetic retinopathy, and one of the world’s foremost authorities on the topic), which concluded with a detailed review of the results with Dr. Ben himself.

Ben_Manny

Dr. Ben Szirth with DHF President, Manny Hernandez

He and his team work tirelessly to make software along with manufacturers that will catch eye complications earlier and help manage them before they get more serious. The machines, one of which speaks (giving you instructions to open/close your eyes, blink, etc.) not only do away with the need to dilate your pupils, but also allow them to collect data that is simply invisible unless you view it in a certain way. For instance, one of the machines takes multiples photos of the retina, in layer fashion, allowing them to conduct the equivalent to a histology of the retina, but without having to slice your eye (which of course we patients appreciate!) Here you can see me with one of the medical students by the talking machine:

Evernote Camera Roll 20141026 151028

The Optovue talking machine (which also speaks Spanish and other languages)

Dr. Ben has pioneered a lot of this technology, working with his Medical Students at the NJ Medical School, and with engineers from the companies that make the equipment, effectively pushing the technology well past the point that many of them believed to be possible. He tries to convey to manufacturers the importance of tools that will see the invisible. One of the most fascinating observations he is able to conduct is the result of a very intense flash from a Canon device that leaves your retina a bit groggy for a few moments (again, without any pupil dilation). It takes a B&W picture of the retina, which allows the visualization of micro-aneurysms typical of mild proliferative retinopathy. These are impossible to see in the color photos, but appear clearly when you take the photo using the higher intensity flash. You can see what I mean below, where the color and B&W photos of the same eye are shown. Evernote Camera Roll 20141026 145724 Evernote Camera Roll 20141026 145725

 

The bad news is that these are photos of one of my eyes. So I caught a glimpse into the future, as unprepared for it as I may have been, because this photo tells him what is going to happen. Dr. Ben said: “This is trying to be a bleeder. The more you do the ‘right thing’, this will disappear within six months.” The good news is I have the information to lower the risk of this blood vessel rupturing, potentially leading to a progression in retinopathy, by exercising more (to increase my Time in Range, doing a Big Blue Test or more every day) and drinking loads of water every morning (as Dr. Szirth recommended). I admit the news made me feel as shocked as I felt back when I got my diabetes diagnosis, back in 2002. It is unfortunately no surprise that this is happening now, since the past few months my diabetes management has not been the best, but it gives me an increased motivation to make sure I do all I can.

Dexcom Share: Product Review

Unpacking the Dexcom share reminded me of the same level of excitement that I had when I got most of the Apple devices: a clean experience that builds anticipation and contributes to a continued positive experience.

Let me proceed my comment by indicating that my experience with my Dexcom CGM is unlike any other I have had with any othe diabetes device in my life, including my insulin pumps (I have been on two in the past decade) and a variety of glucose meters I have used since 2002. I have lost track of the number of times my Dexcom has saved my life: being awaken by or alerting my wife of a dangerously low blood sugar has literally averted disaster on countless occasions.

So naturally I was very happy when I heard that the Dexcom Share had been given the green light by FDA in the US. This setup consists of:

  • A docking station that charges your Dexcom G4 while it connects via Bluetooth with your iOS device (an Android version is in the works, as I understand).
  • The Dexcom Share app that allows you to pair your Dexcom receiver with a Dexcom account “in the cloud” so your data can be shared with those you want to. This app is available through the Apple App Store.
  • The Dexcom Follow app that allows those whom you want to share your Dexcom’s 24-hr window of data along with a few alerts for lows or highs, to Se the data. This app too is available through the App Store.

Getting up and running is quite straightforward (it took me no more than 10 minutes or so), and I felt the process should be fairly intuitive for anyone that has paired Bluetooth devices or paired remotes to receivers. Here’s how I found the experience with each of the pieces of the setup.

THE DOCK

I found the design sleek, though perhaps a bit bulky. You can have it standing up or sideways (with convenient anti-slippery things below) to fit different spaces on your night table.

The principle that it belongs on the night table is an interesting one because it is mostly set up to be parked somewhere, since it has to be plugged to a power source to work. My friend Kelly and her crew made me realize that you could take the Share on the road as long as you can plug it to a portable USB power source, like a Mophie, but that is more of a hack (it’s fairly bulky of a combo) than the way the product appears to be designed for.

The Dexcom Share dock with the Receiver in, powered by a Mophie battery pack.

The Dexcom Share dock with the Receiver in, powered by a Mophie battery pack.

The only annoying thing about the dock was the brightness of the LEDs (a green one indicating power, and a blue one indicating Bluetooth connection, which was VERY bright at night). I may end up putting an opaque tape on top of them, because otherwise there is no way to have the Dexcom screen facing you without being “blinded” by the intensity of the LEDs. Well, maybe not blinded, but they are very bright indeed!

THE DEXCOM SHARE APP

As soon as I fired up the Share app (as instructed in the quick setup instructions in the inside cover of the box), I was greeted by GlucoMonster. Although admittedly cute, I couldn’t help but being immediately reminded of the monsters from MySugr, plus the plushy character (whose role is to signal of there are connectivity problems with your Dexcom via the Share dock) doesn’t really resonate strongly with the Dexcom brand for me. Don’t ask me why: I would honestly do away with the little fellow (nothing personal, dude!)

GlucoMonster

Getting the serial number typed in to pair the app to the receiver proved to be challenging in two ways:

  1. I forgot to write it down (as instructed on the same instructions) before plugging the Dexcom to the dock. I ended up pulling it out and taking a picture of it. It may be a nice (though tiny) future improvement to move the serial number sticker to the opposite side of the receiver so it sticks out visibly outside the dock when the receiver is in it.
  2. After routine use (wear and tear) after years, the sticker can be hard to read. Maybe the app could sense any nearby Dexcom receivers/docks, similarly to how you pair Bluetooth devices?

After the S/N was in, it was very straightforward to complete the process, but I admit that I was missing being able to SEE the CGM data within the same app. I gave up, realizing the Share app was designed to do just that: share the data. So I downloaded the Dexcom Follow app, to get a feel for it, and see that part of the experience too. But not without first inviting my wife to follow my numbers through it too.

THE DEXCOM FOLLOW APP

The experience my wife had with the email she received inviting her to follow me was clean and straightforward: I picture this will be the experience of most people that get this invitation.

The invitation message lto a new follower looks very straightforward.

The invitation message lto a new follower looks very straightforward.

I fully anticipate the need to make the invitation process a bit more sophisticated in the not too distant future, as people change phones, delete apps, etc. which hopefully won’t mean that they need to create a new Dexcom user account to follow someone else every time they change iOS devices. Yet, any observations to improve the user experience and the setup flow PALE when compared to my wife’s joy over being able to see my glucose data remotely. I travel a lot for work, and this is something that has always worried her.

I eventually set up my own Dexcom Follow app, to be able to view my own numbers on my phone: it honestly felt odd, and I would definitely envision a more integrated experience for people whose phones are both sharing and following their own data. Or maybe it’s not a frequent use case, but to me that flow in the experience felt a bit odd.

Now that my wife and I are both setup to see my CGM readings for the past 24 hours, we are VERY happy!!

Disclaimer:
I own under 100 stocks of Dexcom, and I received my initial Dexcom kit and the Dexcom Share free of charge. The opinion I express here is entirely my own and hasn’t been vetted by Dexcom. All they asked of me was to share my opinion about the Share.