An interview with Sara Martinelli de Souza: the Parkinson’s Channel & Living Well with Parkinson’s
Biography
I am Sara Martinelli, 33-years-old, a neurologist from Brazil. I created Parkinson’s Channel, an international educational platform on Parkinson’s disease, to support patients and caregivers in understanding the condition.
Please tell me a little about your background.
Hi everyone, I am Sara Martinelli, neurologist from Brazil, Rio de Janeiro. During my neurology residency program, my interest in Parkinson’s disease and movement disorders was aroused. Since then, I have started a fellowship, attended congresses and seeking more knowledge in this field of neurology.
Can you tell me more about your Advocacy?
In my clinical practice, I have noticed that patients were looking for more information about their own diagnosis. Indeed, I realized that the content for the scientific community was abundant, but for patients it was scarce. Therefore, I had the idea to create an artificial intelligence profile to promote education in Parkinson’s disease, with an empathetic and easily understood approach. After that, the entire Parkinson’s Channel universe was designed as a virtual stimulation space for learning with lightness
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My dream is that individuals with Parkinson’s around the world have access to the best treatment available at the present moment. Unfortunately, treatment for Parkinson’s disease is not equal due to social issues and inequality. My awareness is that patients receive a diagnosis at the first symptoms and remain under follow-up with an expert in movement disorders, in order to offer the best management according to the stage of the disease.
Simultaneously, we hope that the scientific community remains focused on research aimed at developing disease-modifying drugs, or our greatest desire, a cure for Parkinson’s disease.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
Individuals can learn more about Parkinson’s to better understand what is happening in their own bodies. Caregivers and relatives are also welcome, to support the individual in daily life. We prepared an educational program, with lessons taught by Parkinsonina, a virtual teacher, featuring content that is easily understood. All this happens in the academic universe scenario, at Neurology’s University, making the follower feel really like a student in the classroom.
What type of training and how long are the programs?
The training consists of short videos available on social media. The subject lasts for about a month, with a quiz at the end to complete the cycle. Our focus is a completely approach, since the first signs of Parkinson’s, explaining the symptoms and the treatment available.
What effect can your Advocacy have on an individual with Parkinson’s?
We hope that individuals with Parkinson’s can understand what is really happening with them. Besides, we want to bring them updates on the latest research. Our message is that awareness, education, and research go hand in hand to improve the journey of individuals with the diagnosis.
What would you like to see as a future goal for your Advocacy?
Reaching as many people as possible, whether with Parkinson’s or caring for someone with it, and always being a space where education is offered with warmth.
What events do you participate in?
In addition to leading the Parkinson’s Channel, I have actively participated in a multidisciplinary team in Rio de Janeiro, Brasil. Together, we organized two editions of the event “Living Well with Parkinson’s” last year. It is a gathering for individuals living with Parkinson’s and their families, bringing together a multidisciplinary team – including neurologists, speech therapists, physical therapists, and nutritionists – to share experiences and clarify questions about the condition.
How does this also assist the caregivers?
The caregivers have the opportunity to access excellent content about the daily care of individuals with Parkinson’s. At the end, there is an opportunity to ask questions about all the subjects that were covered. This meeting is excellent for bringing caregivers, patients, and the multidisciplinary team closer together.
How can someone get in touch? What is your website?
We are present on Instagram and TikTok under @parkinsonchannel, and on YouTube under Neurology’s Channel. Instagram is @martinelli.saras.
How can others also become advocates for awareness?
I encourage everyone to speak up and advocate for awareness. The world needs your voice and your stance. Somewhere, someone is facing the same pain or fighting the same unfairness. When you raise your voice, you give others strength to keep going.
You can use social media as a tool to promote advocacy or to lead initiatives in your neighborhood. There are many ways to raise awareness, just don’t let this opportunity for change pass you by.
In your opinion, what is the key to effective advocacy?
Don’t give up! Challenges will come, but don’t let them stop you. Keep going, because people need to hear your voice.
How can we better fundraise to support a cure for Parkinson’s?
This is true teamwork—industry, patients, and the scientific community walking side by side, step by step, toward our shared goal: a cure for Parkinson’s.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I found strength through my spirituality, by reading the Bible and seeking God.
Why should people who don’t have Parkinson’s care about this?
First of all, because that’s the idea of living in a community: caring for and taking care of one another. Second, the world’s population is aging, and the number of individuals living with Parkinson’s is rising as never before in human history. Caring about Parkinson’s awareness means caring about your future or the future of someone close to you.
If you had one song that would tell us more about you or represent your life, which song would it be?
I am a Christian, and the song that represents my life is “Champion” by Bethel Church. It is about motivation and victory when walking in the way of God.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
You are not alone! The scientific community is dedicated to developing advanced treatments, and we hope that new options will soon help ease the journey of individuals living with Parkinson’s.
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
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