The #RAREvolutionary Eleonora Passeri has shared her experience for the October #RARETalk. We are happy to invite you to read the following interesting interview.
1) Hi Eleonora, welcome to the RE(ACT) Community. Could you tell our readers something about your professional life?
Hi all! My name is Eleonora Passeri and I am a science and social media consultant with a Ph.D. in Neuroscience. I have always been fascinated by the brain and the mind. During my education, I developed a strong passion for psychiatry and cells biology. After my Ph.D., I moved to the US for my postdoctoral fellowships (McLean Hospital, Harvard Medical School; Georgetown University; Johns Hopkins Hospital) where I investigated schizophrenia, bipolar disorders, and dementia by looking at the underpinning cellular mechanisms associated with such severe mental illnesses. While I was working at Johns Hopkins Hospital, beside bench research duties, I led and organized an educational program called "Mind the Gap" at the Psychiatric Department. The aims of these workshops were to bridge young researchers and clinicians as well as ameliorate our communication in order to advance research and help patients. At the same time, I worked on a couple of research projects on childhood onset schizophrenia, a rare form of schizophrenia with the onset prior to 12 years. I read many scientific papers about such devastating mental illness and I wanted to know more, so I surfed the web and I came across about Vlog –video blog- of a family with a daughter affected by childhood onset schizophrenia. She was a beautiful little girl and her story was really moving. I started to realize the importance patients have on research and how crucial is listen to them…patients know best and they need to have an active role on scientific research.
2) In your opinion, how should the researcher be today?
In the last 50 years research has made huge progresses, but I am totally convinced that now researchers have to change their own mindsets. The world has changed, researchers have to keep up and embrace the changes. Researchers need to develop strategies to engage with patients, society, and potential investors –founding procedures have changed too-. Researchers need to communicate much more with stakeholders, explain the relevance of their projects, and translate science in a comprehensive language. I have to be honest, something is changing, but yet Europe is moving slower than the US or UK; will soon know how it goes with Asia.
3) You are very active on Social Media. Why did you choose the digital channel to create awareness about rare diseases?
One of my dearest friends, is an Aspy. He has Asperger, defined by The World Health Organization (WHO) as one of the autism spectrum disorders (ASD). A couple of years ago, I went –as observer- to the center where he was. I wanted to see how did ASD look like. I was beginning my personal journey on the real world behind diseases. Afterwards, I went to Nicaragua for three months because I had read on Twitter that children with disabilities or mental illnesses were called "not existing people" in Central and South America. Why? Simply, because governments register children when they go to school, but since parents of these children are not enrolling them, the governments do not know about their “existences”. That experience indeed marked me. When I came back, I opened Universal Mankind, one of my Facebook pages. People like us, from developed countries, think the entire world is like ours, instead, it is true the opposite: in the majority of the world children with disabilities are invisible. Give them a voice was my duty. Social Media are the perfect tools to do it; even more important is move from virtual to reality and establish “personal” connections with people, do solid network, and try new collaborations between diverse stakeholders. I believe Social Media are going to change the world of research as well as the way we do it. First signs are right here.
4) Could you tell us something more about the Universal ManKind page?
I personally admin and manage “Universal Mankind” page, that is aimed at spreading awareness on Rare Diseases and Mental Health. I like to combine science, patients, and art contents. Every week I choose a topic, usually I get in touch with patients to collect information and to coordinate my work. Patients are super-nice, they are very generous with me: They share all the links, blogs, videos, articles they have. I check them all, do my personal research, and plan what to post and when. Every day I share a post, balancing science, patients’ perspective, and art –Sundays are dedicated to art-. Later, I share the contents on Twitter, Instagram, and LinkedIn. I like to communicate scientific research in a different way. I use social media because I believe they are the most powerful tools we currently have to share knowledge.
Why art? I am Italian and I grow up surrounded by beauty; a famous quote of Dostoyevsky says: “Beauty will save the word”. Art use a universal language that everyone can “understand” without the need of words. I have some good friends of mine who are photographers and painters, so I decided to do awareness on Rare Diseases and Mental Health by combining their art with a quote of a patient or family member, most of the times are moms! Moms are awesome! The main goal is to give patients a voice to be heard by society and let society know about such Rare Diseases or Mental illnesses. Moreover, thanks to my social media activities, I have expanded my network of contacts, met various groups of patients with Rare Diseases and Mental illnesses, and further broaden my horizons as scientist and as person.
5) Is there a particular experience related to your activities that you want to share with us?
A couple of weeks ago, I joined The European 22q Alliance 2nd meeting in Dublin. The 22q deletion syndrome is a Rare Disease, in few cases, associated with childhood onset schizophrenia that I researched when I was at Johns Hopkins Hospital. The meeting opened up with the presentation of YEEP (Young Experts by Experience Panel), a group of amazing young ladies diagnosed with 22q deletion syndrome.
It was really emotional for me on a personal level...I was face to face to the persons which were behind the cells I used for my experiments. I was seeing the persons behind the unidentified biological samples I used for my research. Of course, they were not the “same” persons who kindly donate their biosamples, I will never know their names, but at that exact moment, the 22q deletion syndrome got faces, names, stories, and lives... I connected with people.
It has been a long journey for me since I have left bench research and I have learned many lessons from patients, most of all I have learned to listen to them, because they are the “expert by experience” as Anne Lawlor once told me. I really changed my prospective as neuroscientist and person, I opened my eyes and now I see the world from a different angle and I like it a lot!