I Can’t Believe it’s Week 9!

My how the time has flown! I remember being here the first week and thinking to myself, Wow ten weeks is a long time. UPDATE, IT IS NOT A LONG TIME!!! ESPECIALLY FOR RESEARCH! That means as of right now, after distributing our survey we are patiently waiting for responses and analyzing them as they come in. So far we do not have a lot, but hopefully by Monday there will be more responses for us to develop a conclusion.

This week we conquered multiple tasks:

First, we gathered all responses we had from showing our poster to our peers. We ended up changing some of the colors around and adding some icons for a more visual effect. Also, our data boxes are still empty *cringe* because we are hurriedly collecting surveys from people. We will add that aspect to our poster early next week and also into our paper. Here’s the new version: RareDisease REU PosterNEW.pptx

Second, we went over our paper again and keep on correcting things! Our peer reviews from last week didn’t say we had a lot of mistakes, which is awesome! I’m really proud of how well we written. Also, we are going to add a footnote about our authorship: as of now we have kept in alphabetical order, but we want to say that we equally contributed. We really worked on it equally, I wouldn’t feel right with only one of us getting the credit. Having a great partner rocks. Here’s the paper: 2017CHI_BastinPereira_RareDiseaseFacebookApp (4) Next week we are definitely cranking out the rest of findings and future work. Also, since we are focusing on how people feel about something, Fernando gave us a paper to read (TreatYoSelf: Empathy-driven behavioral intervention for marginalized youth living with HIV) that could give us tips on how to write about the opinions the rare disease population has on the mechanisms we proposed in the scenarios.

The big challenge this week was constructing a video. It actually came out not half bad! We really wanted to emphasize why the rare disease community needs support. Patrick may have thought it was cheesy but we were both proud of how it turned out :’) Basically it is an overview of our project and includes the main methods and our outcome. Click here to watch it: https://www.youtube.com/watch?v=EBFNEWgmnXY&feature=youtu.be

Finally, on Friday we had a longer meeting with Patrick and Fernando where we set up the outline for the future of this project. Basically, we determined that based on data we have collected that the caregivers play a big role in a person with a rare diseases feeling supported/not supportive. Basically, we believe getting the caregivers (formal/informal) opinion on supporting those they take care of. We decided that could be started in the fall, and we aim to start researching where to recruit participants (caregivers) to be in an interview study. We hope with the results of our study now from the surveys, we can readapt the survey into a more short, multiple choice answers that could easily be spread to a larger population.

Here’s a list of the Top 5 Things I Wish I Knew Going Into the Pro-Health REU:

  1.  You will not get to sleep in, at all. You have work to do. GET TO IT!
  2.  Deadlines are not suggestions.
  3.  I wish I had known exactly where I was living over the 10 weeks of summer, so I could have packed more kitchen stuff for cooking. I had no clue we would have our own kitchen.
  4.  HOW MUCH I WOULD READ. I spent the 2 weeks before the REU reading about 25 papers my mentor had told me to be familiar with, so that was helpful. But still…you never stop reading (which is cool with me, because I love reading :)).
  5.  There’s no need to be nervous! I was so nervous at first because I felt I had no clue what I was getting into, or I was scared that I didn’t know enough. Yes, there is a lot of work to be done, but you should enjoy it because it’s probably what you love to do.

Here’s a List of 5 things future ProHealth REU students should consider doing to be Successful:

  1. Know why you’re here – to further your education and work hard. If you’re in this REU, you should have a kind of passion and want to work – it shouldn’t be treated as a hassle for you. Still, that doesn’t mean you can’t have fun.
  2.  Get to know everyone. These are your future colleagues! I can’t tell you how many wonderful people I met here, some in which I probably will keep in contact with even when the program is over. Also, make sure professors know who you are and what you do best.
  3.  Be organized. With all the weekly deadlines, meetings, and activities, I would definitely recommend the use of a planner. However if that is too much work, PLEASE MAKE TO DO LISTS! ALWAYS! They are so useful.
  4. Keep yourself busy. There is no waiting around in research. Especially with only 10 weeks. You should constantly be working towards a deadline, improving your paper, or reading. If you don’t know what to do and you aren’t busy, ask your partner for help or ask your mentor.
  5. I think this is the most important one – ASK QUESTIONS. REU’s are for learning more, especially when it comes to topics you are unfamiliar with. Don’t pass by an opportunity to learn more and expand your knowledge. Ask your mentor questions, ask the professors questions, and most importantly ask each other questions – learn from each other!