CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies- PPAIN)
Where families’ own needs and ideas are transformed into research projects.
Work Package 9
Communication and Dissemination
Previous interview: Sandro Bellinzis
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CDG one-to-one
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Eleonora Passeri – The importance of Communication!
7th of December 2018,By SANDRA BRASIL (CDG postdoc Researcher, advocate and patient relations. Email: sindromecdg@gmail.com)
Introduction
My name is Sandra Brasil and I’m a CDG Patient Community Liaison at the Portuguese Association for CDG (APCDG). Today, I have the pleasure to talk with Eleonora Passeri, a PhD in Neuroscience that has dedicated her last years to Public Awareness in the field of Rare Disorders. Welcome Eleonora—it is real delight to have you at CDG One-to-One!
Part 1 – Communication for the Rare Community
Q1: Sandra Brasil: Eleonora, you have a PhD in Neuroscience and you have worked as a postdoc at prestigious institutes such as Johns Hopkins Hospital, The Georgetown University and the McLean Hospital in Boston. What drove you to the Communication field?
Eleonora Passeri: Hi Sandra, firstly let me thank you, Vanessa, and all the CDG community for having me here, it is a real pleasure for me. I have always been passionate about science and how our brain and body work, so I loved my bench research time and I have learned a lot from that experience. What moved me into “alternative” directions was my personal need to help patients and families in a different way. I wanted to get in touch with them, listen to them, and understand how research could have been better addressed in a more patient-centered approach. Communication was, and still is the key, to make this shift.
Q2: Sandra Brasil: You have developed an international cross-disciplinary network between artists, scientists and patient groups on social media. What is the main goal of this network?
Eleonora Passeri: Lately, I have added also another type of “category” to this list: The “supporters” such as friends and cute mascots! To get back to your question, the main goal of this “movement” is trigger a new era of progress, a second Renaissance, thanks to a novel combination of art and science to fill the existing patient-centric gaps by bridging together different stakeholders. Art is a powerful tool, since we are naturally attracted by beauty.
Q3: Sandra Brasil: To you what are the 3 major challenges in creating awareness on social media for rare disorders?
Eleonora Passeri: Based on my experience, I would say: 1) going from virtual to real to establish trustful relationships with people, 2) being unique and create an original niche where share your own contents or those of your own collaborators, 3) and being constant over time –which is very demanding!-. But also, reach out to people, talk with them, being honest, and share your ideas and vision. Being willing to try something new that no one has ever done before and keep testing new strategies or approaches. Failures are part of the game, but keep studying your “followers”, connect with them, show them you are there for them, and things will work out at the end. Believe in your project!
Q4: Sandra Brasil: In today’s world it’s impossible to escape social media. What would be your advice to a patient association on how to take advantage of social media to spread awareness?
Eleonora Passeri: Indeed, we can not escape from socials in our days, but socials are a tool not the aim, so we need to use them smartly. Connect with your community first, get them involved on your projects, organize your team and resources, if you have produced materials and contents already, study them more accurately and find a new strategy to tell your story. This is the first step: 1) organize your own community, 2) create a team, 3) and program your work for the next 6 months at least, better a year. Once this is done, you can move ahead to the second step and connect with other patient groups –same rare disease or different ones-, advocates, and other stakeholders to establish a solid international network intra- and inter- rare diseases.
Q5: Sandra Brasil: You have been collaborating with APCDG to establish a communication plan on social media and now you will have the opportunity to became part of our network as a post doc. How do you feel about this opportunity?
Eleonora Passeri: I am very exited about this new step in my social media and consulting journey! To me all I do on Rare Diseases and with patients is personal, so I am really honored and happy to help out the CDG community as advocate and scientist. What makes me really enthusiastic is the possibility of impacting society and research with a real patient-centric strategy, show people as well as the scientific and policy maker communities that patients and scientists can work together as peers to do some innovative and real original scientific research on a translational and clinical level.
Q6: Sandra Brasil: What is the favorite aspect of your work?
Eleonora Passeri: I might have more than one actually: Creativity, network, and freedom! I love being able to use my creativity for Rare Special Powers art and scientific projects and come up with new ideas and plans. I enjoy a lot talk or chat with people and connect with them; I brainstorm with patients and moms about art and science, to me they are “Experts by Experience”, but I also like to chat with other people…researchers, medical doctors, artists, art historians, journalists, and “common people”, because everyone has a story to tell and something to teach me. So, I talk a lot, but I also love listening to others when they have something interesting to say. I love being free to think, try, and sometime even fail –it is part of the game-. When I was “young” I thought I needed to think “outside the box” to really apply my “critical thinking as scientist”, now I came to the conclusion that there is no box at all, so I just let my brain think freely.
Q7: Sandra Brasil: What part of your work so far do you think is most impactful?
Eleonora Passeri: Organize events of whatever kind or help us spread the word. As an example, at the end of May the local thermal pool complex organized a swim-marathon and all the money from the participants as well various donations were dedicated to Benedetta. We seized the occasion to print new t-shirts, new information leaflets and were present most of the day to inform people about CDG. People want to be informed but need to be in a simple way, no doctors talk or language, simple ABC so that they can understand what it is and this info is still lacking a bit.
Part 2: Personal Life and Hobbies
Q8: Sandra Brasil: Tell me a little bit of what you like to do when you aren't working.
Eleonora Passeri: I might say that somehow I work all day and all time, 24/7 or at the same time, I do not work at all, why? A quote from an unknown person says “choose a job you love and you will never have to work one day in your life”, well…I believe this person was right. I do what love and I love what I do, so it is not a real “work” for me, it is part of me, it is who I am. However, when I have some free time, I love going to museums, visit small little towns and villages around where I live –in Italian we called them “borghi”- to discover amazing pieces of art left by previous generations and still unknown in most cases. I love reading books about history, art, science, novels, poems, classics, economy, politics, biographies…every book is a new journey across time and space. I love classical music, opera, and ballet and when I get the chance I go to theater. I watch very little TV, but sometime I found –few- good programs, movies, and cartoons! I also write fairy tails…but it has been a while since the last one, I have very little time lately.
Q9: Sandra Brasil: What’s your secret to find a good balance between your busy work and personal life?
Eleonora Passeri: Honestly, I do not know if I really have a good balance based on my previous answer, but I have learned to take some time off for me to do the things I like. I would say that a calendar, an agenda, and a to do list help me to organize my time and find some free time for my self and for thinking about my next project.
My name is Sandra Brasil and I’m a CDG Patient Community Liaison at the Portuguese Association for CDG (APCDG). Today, I have the pleasure to talk with Eleonora Passeri, a PhD in Neuroscience that has dedicated her last years to Public Awareness in the field of Rare Disorders. Welcome Eleonora—it is real delight to have you at CDG One-to-One!
Part 1 – Communication for the Rare Community
Q1: Sandra Brasil: Eleonora, you have a PhD in Neuroscience and you have worked as a postdoc at prestigious institutes such as Johns Hopkins Hospital, The Georgetown University and the McLean Hospital in Boston. What drove you to the Communication field?
Eleonora Passeri: Hi Sandra, firstly let me thank you, Vanessa, and all the CDG community for having me here, it is a real pleasure for me. I have always been passionate about science and how our brain and body work, so I loved my bench research time and I have learned a lot from that experience. What moved me into “alternative” directions was my personal need to help patients and families in a different way. I wanted to get in touch with them, listen to them, and understand how research could have been better addressed in a more patient-centered approach. Communication was, and still is the key, to make this shift.
Q2: Sandra Brasil: You have developed an international cross-disciplinary network between artists, scientists and patient groups on social media. What is the main goal of this network?
Eleonora Passeri: Lately, I have added also another type of “category” to this list: The “supporters” such as friends and cute mascots! To get back to your question, the main goal of this “movement” is trigger a new era of progress, a second Renaissance, thanks to a novel combination of art and science to fill the existing patient-centric gaps by bridging together different stakeholders. Art is a powerful tool, since we are naturally attracted by beauty.
Q3: Sandra Brasil: To you what are the 3 major challenges in creating awareness on social media for rare disorders?
Eleonora Passeri: Based on my experience, I would say: 1) going from virtual to real to establish trustful relationships with people, 2) being unique and create an original niche where share your own contents or those of your own collaborators, 3) and being constant over time –which is very demanding!-. But also, reach out to people, talk with them, being honest, and share your ideas and vision. Being willing to try something new that no one has ever done before and keep testing new strategies or approaches. Failures are part of the game, but keep studying your “followers”, connect with them, show them you are there for them, and things will work out at the end. Believe in your project!
Q4: Sandra Brasil: In today’s world it’s impossible to escape social media. What would be your advice to a patient association on how to take advantage of social media to spread awareness?
Eleonora Passeri: Indeed, we can not escape from socials in our days, but socials are a tool not the aim, so we need to use them smartly. Connect with your community first, get them involved on your projects, organize your team and resources, if you have produced materials and contents already, study them more accurately and find a new strategy to tell your story. This is the first step: 1) organize your own community, 2) create a team, 3) and program your work for the next 6 months at least, better a year. Once this is done, you can move ahead to the second step and connect with other patient groups –same rare disease or different ones-, advocates, and other stakeholders to establish a solid international network intra- and inter- rare diseases.
Q5: Sandra Brasil: You have been collaborating with APCDG to establish a communication plan on social media and now you will have the opportunity to became part of our network as a post doc. How do you feel about this opportunity?
Eleonora Passeri: I am very exited about this new step in my social media and consulting journey! To me all I do on Rare Diseases and with patients is personal, so I am really honored and happy to help out the CDG community as advocate and scientist. What makes me really enthusiastic is the possibility of impacting society and research with a real patient-centric strategy, show people as well as the scientific and policy maker communities that patients and scientists can work together as peers to do some innovative and real original scientific research on a translational and clinical level.
Q6: Sandra Brasil: What is the favorite aspect of your work?
Eleonora Passeri: I might have more than one actually: Creativity, network, and freedom! I love being able to use my creativity for Rare Special Powers art and scientific projects and come up with new ideas and plans. I enjoy a lot talk or chat with people and connect with them; I brainstorm with patients and moms about art and science, to me they are “Experts by Experience”, but I also like to chat with other people…researchers, medical doctors, artists, art historians, journalists, and “common people”, because everyone has a story to tell and something to teach me. So, I talk a lot, but I also love listening to others when they have something interesting to say. I love being free to think, try, and sometime even fail –it is part of the game-. When I was “young” I thought I needed to think “outside the box” to really apply my “critical thinking as scientist”, now I came to the conclusion that there is no box at all, so I just let my brain think freely.
Q7: Sandra Brasil: What part of your work so far do you think is most impactful?
Eleonora Passeri: Organize events of whatever kind or help us spread the word. As an example, at the end of May the local thermal pool complex organized a swim-marathon and all the money from the participants as well various donations were dedicated to Benedetta. We seized the occasion to print new t-shirts, new information leaflets and were present most of the day to inform people about CDG. People want to be informed but need to be in a simple way, no doctors talk or language, simple ABC so that they can understand what it is and this info is still lacking a bit.
Part 2: Personal Life and Hobbies
Q8: Sandra Brasil: Tell me a little bit of what you like to do when you aren't working.
Eleonora Passeri: I might say that somehow I work all day and all time, 24/7 or at the same time, I do not work at all, why? A quote from an unknown person says “choose a job you love and you will never have to work one day in your life”, well…I believe this person was right. I do what love and I love what I do, so it is not a real “work” for me, it is part of me, it is who I am. However, when I have some free time, I love going to museums, visit small little towns and villages around where I live –in Italian we called them “borghi”- to discover amazing pieces of art left by previous generations and still unknown in most cases. I love reading books about history, art, science, novels, poems, classics, economy, politics, biographies…every book is a new journey across time and space. I love classical music, opera, and ballet and when I get the chance I go to theater. I watch very little TV, but sometime I found –few- good programs, movies, and cartoons! I also write fairy tails…but it has been a while since the last one, I have very little time lately.
Q9: Sandra Brasil: What’s your secret to find a good balance between your busy work and personal life?
Eleonora Passeri: Honestly, I do not know if I really have a good balance based on my previous answer, but I have learned to take some time off for me to do the things I like. I would say that a calendar, an agenda, and a to do list help me to organize my time and find some free time for my self and for thinking about my next project.
Dr. Eleonora Passeri received her Ph.D. in Neuroscience from the Eberhard Karls University in Germany. After completion of her degree, she was a post-doctoral fellow in various prestigious US institutions, including the Harvard Medical School and John Hopkins Hospital. Early on during her academic career, she developed an interest in communication, which prompted her to lead Mind the Gap, an educational program aimed at bringing together young researchers and clinicians, to ameliorate communication and advance research. More recently, Dr. Passeri began building expertise and knowhow on social media campaigns and has been dedicating herself to raising awareness on Rare Disease and Mental Illnesses. Along the way, she has established a solid, international, and multi-disciplinary network spanning between research professionals and patient organizations. Her interests are focused on research, communication, and on bridging the gap between professionals, patients, and society. She hopes to contribute for CDG lives by voicing the problems of this community, boosting visibility and awareness as well as by sharing and divulging relevant scientific knowledge. In addition, Dr. Passeri is an evaluator for the European Commission and a consultant on scientific issues for several research institutions and patient organizations.
You can also download the interview below:
eleonora_passeri_cdg_one_to_one.docx | |
File Size: | 126 kb |
File Type: | docx |
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Inés Summer Internship CDG for Undergraduate Students:
Currently the WP2 expressed interest in hosting a student to conduct summer research focused on diagnosis for CDG.
This position is available under the scope of the “1st Inés Summer Internship CDG Program for Undergraduate Students”.
This position is available under the scope of the “1st Inés Summer Internship CDG Program for Undergraduate Students”.
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