13 posts from April, 2014

Speaking up for hope during ALS Awareness Month

Posted April 28th, 2014 by

May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers went to work trying to find new ways to slow his progression. But their trial and error approach just wasn’t working, and so they set out to find a better way. And that’s how in 2004, PatientsLikeMe was created. If you don’t know the story, you can watch the feature documentary of the family’s journey, called “So Much So Fast.”

ALS is considered a rare condition, but it’s actually more common than you might think – in the United States, 5,600 people are diagnosed with ALS each year, and as many as 30,000 are living with the condition at any given time.1 ALS affects people of every race, gender and background, and there is no current cure.

Even before PatientsLikeMe, Jamie started the ALS Therapy Development Institute (ALS TDI), an independent research center that focuses on developing effective therapeutics that slow and stop ALS. Now, it’s the largest non-profit biotech solely focused on finding an effective therapy for ALS. And on May 3rd, “The Cure is Coming!” road race and awareness walk will be held in Lexington Center, MA, to help raise funds for ALS TDI. There’ll be a picnic lunch, cash prizes for the road race winners and live music. Last year, over $110,000 was raised for ALS TDI – if you’re in the neighborhood, join the race today.

Also, the ALS Association (ALSA) sponsors several events during May, and this year, you can:

Back in January, we shared a special ALS infographic on the blog – the PatientsLikeMe ALS community was the platform’s first community, and now, it’s more than 6,000 members strong. If you’ve been diagnosed with ALS, there’s a warm and welcoming community on PatientsLikeMe waiting for you to join in. Ask questions, get support and compare symptoms with others who get what you’re going through.

Keep an eye out for more ALS awareness posts on the blog in May, including an interview with one of our ALS members.

 Share this post on twitter and help spread the word for ALS Awareness Month

 


1http://www.alsa.org/about-als/facts-you-should-know.html


A day in the life of Software Engineer Jonathan Slate

Posted April 25th, 2014 by

Our members share a lot about their unique health journeys and experiences here on the blog. Just recently, Kim spoke about her shock with MS, Betty talked about her frustration finding the right diagnosis, and Lori’s been sharing about life on the lung transplant list. And as part of our ongoing “A day in the life” series, PatientsLikeMe Software Engineer Jonathan Slate shared about his own recent journey after his son Nolan’s hand injury. He walked through the whole experience, from Nolan’s initial accident to how a simple CD with some x-rays on it sparked an ‘ah ha!’ moment for him.

 

You started working at PatientsLikeMe about 6 months ago – tell us a little bit about what you do.

I work as a Software Engineer, developing new site features, fixing issues and working with other engineers to come up with creative solutions to the technical challenges of building and maintaining the PatientsLikeMe site. I’ve also done some work on the PatientsLikeMe Open Research Exchange project.

You’ve said you experienced two “eureka” moments at PatientsLikeMe – what happened, exactly?

Well, the first was on the PatientsLikeMe forums, where I found out, first hand, just how comforting it can be to share a difficult story with patients like me who can truly empathize with my own personal struggles. But it is the second eureka moment that I want to tell you about.

When I started working at PatientsLikeMe six months ago, I thought I basically got it. As a software engineer, there were a lot of opportunities available to me, but I chose to work at PatientsLikeMe because I could see they were an innovative company with a positive mission, passionate leaders, and energetic, thoughtful, and enthusiastic employees.

Then, a couple of weeks ago, my 12 year-old son Nolan was playing “crab soccer” in gym class. Crab soccer is like soccer, but played on all fours, with belly buttons pointing towards the caged lights in the gymnasium ceiling. Kids scuttle around trying to kick a giant ball without losing their balance. At some point during the game, Nolan bent his left hand back too far and heard a popping sound (ouch!). He went to the school nurse, and there was some swelling, so she gave him some ice and sent him back to class. Then came the sage advice of his fellow fifth graders, “It will feel better in one hour,” and “If you can move it at all, it’s not broken.” Wrong on both counts, as it turns out.

By the next morning it didn’t feel any better, and Nolan’s hand had swollen considerably. So we took him to the pediatrician. The doctor thought it was probably just sprained, but she ordered an x-ray just in case. When we met up with the pediatrician again, she showed us the images, and even to my untrained eye, there was a clear break. So they wrapped him up in a splint and gave us the contact info for a hand specialist. We left the office carrying a CD with the x-rays to bring to the specialist. Of course, being an engineer, I couldn’t help but think this system was a bit antiquated. Hand delivering a CD, I mean, really!?

But when we got home, my first thought was to pop the CD into the computer and get another look at the x-rays. I thought my wife might like to see them, as well. But when I put the CD into our home computer, there were just a bunch of weird files, no images as far as I could tell. After an hour or so of jumping through a number of technical hoops, I managed to get an application installed that could read the files on the disk. What came up wasn’t just some image files, but a medical record of sorts, with the images and a bunch of metadata. I showed the clearest x-ray to my wife. “Wow, that’s a pretty good break,” she said. “Can you send me that so I can put it on Facebook?” So I emailed it to her and I also printed out a couple of copies for Nolan to take to school and show to his friends.

The eureka moment didn’t come until I was on my way into work the next morning. Nolan and I had left the pediatrician with a CD full of useful medical data related to his condition, but the only reason we had it was so that we could deliver it to the next doctor. There was no expectation that we would actually want to look at the x-rays ourselves, and in fact doing so required technical skills beyond that of the average person. And if it had not been for the “antiquated” system in which CDs are delivered by patients, by hand, we never would have had the data in our possession at all.

How has Nolan’s experience changed your perspective on the relationship between healthcare, technology and data donation?

I know that a broken hand is small potatoes compared to what many PatientsLikeMe users have to deal with every day. But I still think there’s something to learn from this experience. Dealing with a broken hand is a pain. Nolan’s saxophone and drums are on hold. He can’t participate in all the outdoor activities he would like. But having those x-rays helps to make the experience a bit more tolerable. Having these images puts my wife, Nolan and I more in control. We have a better understanding of what is happening, and we can choose to share the information we have – how we see fit. And that is what PatientsLikeMe is all about: putting patients in control of their own health and data.

Finally, how is Nolan doing? Is he back playing drums and soccer yet?

Nolan is doing pretty well. His hand is in a splint, not a cast, which does make some things easier. And he got his friends to sign the velcro straps, so he didn’t miss out on the “fun” part of breaking a bone. But he can’t wait to get it off. Today I had to tell him he couldn’t go out and play baseball with his friends. But he can play soccer, as long as he doesn’t try to do any throw-ins. Drums and sax are still out, but he will be playing xylophone, one handed, in an upcoming school concert!

We’ll be continuing with more “Day in the life” portraits featuring PatientsLikeMe employees from different departments, so stay tuned for more! You can also check out some of our previous entries by clicking here.


Interested in joining our engineering team and making a difference in patients’ lives? Check out our Careers page to see our current job openings.