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Q&A with NF Patient who Co-authored Published Research Paper on NF

Annabel Peterson, a young adult living with NF2, is a co-author on a study out of Massachusetts General Hospital that the Children’s Tumor Foundation supported with a contract award. Shortly after the article was released, we had a chance to chat with Annabel about her role in the research, what was learned, and how it feels to study the same rare disease she lives with.

In your own words, tell us about the study and what your role was.
Massachusetts General Hospital and Harvard Medical School have a program called the Center for Health Outcomes and Interdisciplinary Research CHOIR that provides clinical care and research with a focus on improving brain health in patients with chronic medical conditions and patients recovering from injury or surgery. The study that I was involved in was about their web platform, called NF-Web, which is an online mind/body program specifically for NF patients to improve coping with stress and resiliency. 

My role was to provide feedback on the platform and its accessibility for NF patients, writing discussion questions for users to respond to on the discussion board, screening people based on the eligibility criteria, helping users navigate the platform, logging data, and helping write the research paper.

How did you get involved in scientific research?
In 2020, I got an email from Dr. Ethan Lester that he was looking for NF patients to give feedback on the NF-Web platform. I reviewed and gave feedback on the platform but also started to read about Dr. Lester’s research and IBHCRP. I thought it was so cool to see so much research on NF and psychology, combining two topics I’m very passionate about. I decided to ask if I could intern or volunteer with IBHCRP. At the time I was in graduate school at BU for mental health counseling; unfortunately, I couldn’t get research hours to count toward my program, but I was excited to volunteer regardless.

What surprised you?
I think I was surprised by the lack of diversity in the sample. It was mostly white, well-educated females with NF1. I hope future studies will include more people with NF2 and schwannomatosis, as well as people from diverse backgrounds. 

How does it feel as a patient to be contributing to the understanding and treatment of NF?
I think it is fantastic that Dr. Lester and his team were looking for NF patients like myself to give their feedback on the NF-Web platform to ensure it is accessible to all. It felt exciting to contribute to gaining a better understanding of how NF can impact our mental health and what can be done to manage it better, especially considering how most NF research focuses on the physical aspects of these disorders. I know that having NF can be stressful and poses many unique challenges, so having resources like NF-Web are so important for navigating these challenges and improving our quality of life.

Click here to read the study:

Click here for NF-Web (the platform is now accessible to everyone):

Annabel Peterson currently lives in Massachusetts and is a clinical program manager at Deaf Respite, a program for deaf and hard-of-hearing adults experiencing psychiatric crises. Annabel lives with neurofibromatosis type 2 and is also on the CTF Junior Board.