20 results for “"a day in the life"”

Worth a thousand words: A day in the life of Larry

Posted April 14th, 2017 by

As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family so she can spend the entire next day with them, from start to finish.

A day in the life of Larry Tyler

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

When Sarah’s friend, Teri, asked her to capture a day in the life of her father, Larry Tyler, she was both shocked and honored. Larry, living with ALS that required 24-hour care, wanted the photos released to raise awareness and funding for ALS.

Sarah was there with her camera, from Larry’s wake-up at 10:30am, until he went to bed that evening. What emerged was a series of 24 deeply moving photos that capture a day in the life of Larry and his family.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

While she was prepared for sad moments with the family, she wasn’t prepared for the level of caregiver exhaustion she witnessed. For Sarah, the realization that ALS is a family disease was the hardest part of her visit.

 

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Despite the hard moments of exhaustion, chaos and frustration, Sarah also witnessed how Larry and his family coped: with laughter and humor.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Reflections

After this time with Larry and his family, Sarah now wants to photograph a day in the life of one person living with ALS every year. Even though she doesn’t have a personal connection to ALS, she feels that this story could resonate with other caregivers. She shared her collection at a gallery and was moved by the reception.

Sarah hopes the collection will not only raise awareness for ALS, but also to increase awareness of the need for caregiver support and therapy. In the meantime, she hopes that her photos can do some good.

Check out the rest of Sarah’s 24 photo collection with Larry.

Find other ALS caregivers

Do any of Sarah’s photos resonate with you? Share in the comments.

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A day in the life of User Experience Designer Flavia Gnecco

Posted October 21st, 2015 by

By now, you’re probably familiar with our “Day in the life” series. But in case you haven’t had a chance to check it out, here’s a quick overview: members of the PatientsLikeMe community share a lot about their health journey and experiences on the site. In turn, we like to share stories from the PatientsLikeMe team every now and then to help everyone get to know us, what we do and why we’re happy to be a part of PatientsLikeMe.

Today, we’d like to introduce you to Flavia Gnecco, a User Experience Designer on our UX and design team. Flavia, a world traveler, joined us last October (happy 1 year anniversary, Flavia!). Read her interview below, and don’t forget to take a look at the other posts in the “Day in the life” series if you haven’t already.

1. How did you first hear about PatientsLikeMe? What brought you to the organization?

I first heard about PatientsLikeMe while I was working at NIBR (Novartis Institute for Biomedical Research) back in 2012. The name came up while brainstorming around how researchers could find out about actual patient experiences. Fast forward a two years later and I came across a job posting for user experience designer at PatientsLikeMe. The name had stuck in my mind. When I learned how PatientsLikeMe was founded, I was sold – it is so authentic and the mission is one that I knew I could stand behind. I got into design specifically so I could work on projects that were having a positive impact on the daily lives of others. I studied Industrial Design in grad school and never thought I’d end up working for a website but when I realized that the process was the same and the outcome was exactly what I was hoping to achieve, it made a lot of sense.

2. Tell us a little about your role as a user experience designer. What kind of projects are you working on right now?

Right now I’m working on a few things. My biggest project so far has been to figure out the first steps towards improving how members can record their experiences, with different conditions. It’ll make things more engaging and the result will be more meaningful to our users. For now that means I’m doing a lot of sketching for how different interactions might work on the site (i.e. if you click a button, what should happen next?).

I collaborate a lot with the engineers who make sure things actually work on the site, and the UX team also works very closely with the health data integrity (HDI) team to design questions and make sure they are accurate but also sound like a human wrote it. Admittedly, it’s a work in progress! While I was in design school I specifically remember saying, “You can apply the design process to anything – you can even design how you ask a question!” Who knew I was predicting my own future? 😉

I’m also working on an ethnography project and get to talk directly to people who are figuring out how to live with a chronic condition. This is really inspiring and I know will influence how I think about the rest of my work – and my life!

3. What’s your favorite part about working at PatientsLikeMe?

Just one?! The people – definitely. There is always an interesting conversation happening and I’m constantly learning something new. I’ve been here a year now but I have yet to be bored. I take that as a good thing. I also really like the fact that PatientsLikeMe is an organization that’s trying to do right in the world. I’ve learned from experience that it’s very important to me. Oh – and bonus – I get to be mentored directly by Kim Goodwin and Robert Reinman.

4. You’ve traveled all over the world and are fluent in 4 languages. What’s your favorite destination outside of the U.S. and why?

Tough question! I’m lucky that I have multiple places that I can call home that are also incredible destinations (Florence, Italy; Lima, Peru; and in the US, Boston; New York; San Francisco) I get to go to those places almost every year.  My two-year-old son has already been to all those locations except NYC…but that’s already in the works.  I don’t know what I’d do if I couldn’t travel!  But honestly, my favorite destinations are all those places I still haven’t been to. I’m definitely a fan of the journey and discovering new places but I’m a quiet adventurer – more on the foods, museums, dramatic landscapes and hikes. High on my list of things to do soon is to buy a round-the-world ticket.

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