LIBRE Project Blog
Busy September at LIBRE!
We started September off with a few big changes and events. Melinda Rossi, LIBRE's Research Assistant since the beginning of the project, has moved on to a new and exciting job in health policy. We appreciate how much Melinda has done and we will miss her enormously! Thankfully, before she left, Melinda was able to train LIBRE's new Research Coordinator, Emily Dore, who started three weeks ago. Emily is excited to be a part of a great team doing important work. Check out her brief bio here.
On September 12th, we participated in BSONE's Walk for Burn Survivors for our second year in a row. It's always a great day full of familiar faces, sunshine on the Charles, and good food! If you haven't been before, we would highly recommend it.
Also this month, we reached 450 completed surveys!!!! We celebrated by making hats and trying to balance them on our heads. This means we're 150 surveys away from our goal, with a few more months left of recruiting. We're now looking for burn survivors who sustained their injury less than 10 years ago so that our responses are balanced between recent and further out burn injuries. Help us spread the word so we can reach our goal! Contact us through email, libre@bu.edu, phone 1-844-255-9987, or through our website.
Refer a Friend Summer: Earn $10
If you are a past LIBRE participant, you can refer a 
friend to us and receive $10! The Refer a Friend Summer program is only taking place in July and August.
To qualify, have a burn survivor friend that is interested in taking the LIBRE survey contact us. The burn survivor must be:
- 18 years or older
- Had a burn injury less than 10 years ago
- Has not previously participated in the LIBRE Project
If they qualify to take our survey, we will mail you $10.
Burn survivors interested in participating in the survey can contact us at 1-844-255-9987, at libre@bu.edu or on our website. Make sure to tell them to mention your name when they contact us!
Sign Up for our Newsletter!
Don't miss out on updates about the LIBRE Project, our research findings and other interesting LIBRE happenings - sign up for our newsletter! These newsletters will only go out a few times a year. They're the best way to stay in touch with everything going on at LIBRE.
Go to our newsletter page to sign up now. We're currently putting together our summer newsletter. Be sure to sign up so you receive it!
LIBRE Animated Infographic Updated!
LIBRE's informational video has had a redesign! This short animated infographic was created last fall to describe our project in a minute and a half. Over the past few months, we've worked with Boston University’s student run advertising agency, AdLab, to spruce up the graphics to give the video a smoother look and feel and to add closed captioning.
AdLab also created a static infographic, a poster version of the video below. We think both the poster and video are great, easy to understand, beautiful representations of the goals of the LIBRE project. Check out the video below and see for yourself!
LIBRE in Chicago: American Burn Association 47th Annual Meeting
Phew, Team LIBRE made it back to Boston safely after a whirlwind week in Chicago, IL for the American Burn Association 47th Annual Meeting. The week was packed full of meetings with burn survivor groups and burn clinicians, giving and attending presentations, displaying our research through posters, and talking with people at our LIBRE booth while handing out chocolate and LIBRE information.
A View of Sunny Chicago, IL
If you don’t know, the American Burn Association is an amazing nationwide organization dedicated to improving the quality of care for burn survivors. Its members are dedicated to supporting burn-related research, education, care, rehabilitation and prevention. We are so thankful for their support and for the opportunity to attend their annual meeting!
We want to thank everyone that stopped by our LIBRE booth to say hi and talk more about our project and everyone who visited one of our presentations or posters. It was a pleasure to be able to continue to spread the word about LIBRE and start conversations with individuals about the impact burn injury has on daily life.
Pens, Lindt Chocolates and Informational Cards at LIBRE's ABA Booth
Also, we would like to congratulate our LIBRE team members who gave presentations or had posters at the conference concerning LIBRE and other great burn research they do. Listed below is a snip-bit of what our team members presented last week:
- Molly Marino, MPH presented Social Participation of Burn Survivors: A Conceptual Framework (the conceptual framework guiding the LIBRE project)
- Lewis Kazis, ScD presented overviews of the LIBRE project at several meetings of burn clinicians and burn survivors
- Colleen Ryan, MD, FACS, presented The Impact of Facial Burns on Patient Reported Health Outcomes Following Burn Injuries in Young Adults: A Five Year Study
- Colleen Ryan, MD, FACS also presented, Is Real-time Feedback of Burn-Specific Patient-Reported Outcome Measures (PROMs) in Clinical Settings Practical and Useful?
- Jeff Schneider, MD, showed his poster Assessment of an Interactive Video Game System for Upper Extremity Burn Contractures (which won an award for Best in Category!!)
- Vivian Shie, showed the poster A Preliminary Study on qEEG in Burn Patients with Chronic Pruritis
Dr. Colleen Ryan and Dr. Jeffrey Schneider at the award winning poster Assessment of an Interactive Video Game System for Upper Extremity Burn Contractures
Explaining LIBRE – New Infographic Poster
How do you explain the LIBRE project in one visually appealing poster? On a single page, how do you show the impact burn injury has on daily life, why it needs to be studied and how the LIBRE Questionnaire will help us better understand and improve burn recovery? Well, we tasked a group of Boston University undergraduate advertising students to do just that!
Below, check out our beautiful new static infographic created at Boston University’s student run advertising agency, AdLab. We’ve been working with AdLab for the last year and a half. The group has helped us create the LIBRE name, logo, design, flyers and so much more! Keep an eye out for new AdLab designed products coming soon.
“The New Normal”: LIBRE in Boston University News
The LIBRE Project has made it into Boston University School of Public Health news! The article highlights the story of an amazingly resilient burn survivor, Diana Tenney, on her personal path from traumatic injury to what she describes as her "new normal".
Interwoven with Diana’s story are the insights of Amy Acton, the executive director of the Phoenix Society for Burn Survivors. Amy stresses the need to better understand the issues burn survivors face in daily life to create more effective and comprehensive support services.
This, of course, is the gap the LIBRE Questionnaire wants to fill - the gap between what burn survivors need to fully recover and what services are available to them. As the LIBRE Project's Principal Investigator, Lewis Kazis, ScD, puts it, "if you can't measure it, you can't change it."
So check out the full article here and feel free to share it with your friends, family, and social media network. We hope this article starts a broader conversation around issues faced by burn survivors and what we can do to support them on the path to their "new normal".
Halfway There, 300 Surveys Completed!
Just a quick update from LIBRE headquarters, we officially hit 300 completed surveys this week! We are now half way to our goal for this phase of the project, to have 600 surveys completed by burn survivors.
As always, we're overjoyed by the willingness of burn survivors to take the time to answer our survey questions. Our last update was almost exactly 3 months ago when we hit 200 surveys. This means we collected 100 surveys in 3 months!
This of course also means that we have 300 more surveys to go! We are now focusing on burn survivors that had their injury less than 10 years ago. We have heard less from this group of more recently burned survivors, and want to make sure that their experiences are equally reported in our survey.
Feel free to spread the word to burn survivors injured less than 10 years ago who may be interested completing a survey on social recovery. They can contact us through our website, or by phone or email at 1-844-255-9987 or libre@bu.edu.
LIBRE Staff Left to Right: Rene Soria-Saucedo, Melinda Rossi, Flor Amaya, Molly Marino, Marina Soley Bori
LIBRE Animated Infographic Unveiled
In the Fall of 2014, the LIBRE team worked with Boston University’s student run ad-agency, AdLab, to create our first animated infographic! The infographic is our way of getting the word out, in an easy to understand format, about what LIBRE is and why it’s important.
In under 2 minutes, this video explains the need to better understand the impact burn injury has on daily life and how the LIBRE questionnaire will help to fill this gap. It presents some of the challenges that burn survivors face, how the LIBRE questionnaire is being developed, and how the questionnaire will improve burn recovery.
You can check out the infographic below. It will also be posted on the top of the main page of our website. And feel free to let us know what you think at libre@bu.edu.
LIBRE Facebook Page Launched
We’re pleased to announce that LIBRE has officially joined Facebook! We plan to use this page to:
- keep our LIBRE community up to date with what’s going on at LIBRE;
- release findings from the LIBRE study;
- post interesting information on the social recovery of burn survivors;
- and stay in touch with past participants and others interested in LIBRE.
As LIBRE will be an on-going project for a few more years to come, we want you to be able to follow our journey. We also want you to have a place to provide us feedback and insight from your own journeys.
So, like us on Facebook, leave us comments, send us messages and keep track of what we have going on.
We hope to see you on Facebook! You can access our site here.
