An interview with Sabela Avion from Parkinsonic on PMD Alliance (Parkinson & Movement Disorder Alliance) & being a Davis Phinney Foundation ambassador on December 8, 2023 by George Ackerman, Ph.D, J.D.
Biography
Sabela was born and raised in Spain and works as a translator in New York. In May 2016, at the age of 38, she was diagnosed with early-onset Parkinson’s disease (EOPD). One of her first actions as an activist was to create a website, Parkinsonic. In 2020, she joined the women of Con P de Párkinson, a platform created by and for Spanish-speaking women living with Parkinson’s. Today, Con P de Párkinson is a non-profit association that works to achieve three objectives: to give visibility to Parkinson’s in general and EOPD in particular, to promote research that includes a gender perspective and to improve the quality of life of those living with PD and their families.
In 2023, she began collaborating with the Davis Phinney Foundation and PMD Alliance as an Ambassador serving the Spanish-speaking community in the United States.
Please tell me a little about your background.
I moved to California in 2000 for grad school at the now-called Middlebury Institute of International Studies at Monterey (MIIS). I worked in the private sector for a couple of years. Since 2006, I’ve been working at the United Nations in New York and Geneva as a translator.
Can you tell me more about your organization? What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
In 2023 I started working closely with PMD Alliance and the Davis Phinney Foundation, I particularly like focusing on quality of life and underrepresented communities. As a native Spanish speaker, and a trained translator, I’ve found that’s an ideal way to get involved.
I also encourage everyone to participate in studies – we might not find a cure fast enough for ourselves, but we need to be involved in research!
What type of goals do individuals with Parkinson’s have when working with you?
Live well/better.
What type of training and how long are the programs?
I’d refer you here to the PMD (https://www.pmdalliance.org) and DPF (Davisphinneyfoundation.org) websites for that info.
What effect can it have on an individual with Parkinson’s?
Realize that it’s possible to live life despite having PD.
What events do you participate in?
Anything that’s 1) close to NYC and/or 2) online, as often as I can.
WPC, and MDS (Movement Disorder Society) events.
How does this also assist the caregivers?
I’d rather call them care partners or allies. They can also see they’re not alone.
How can someone get in touch? What is your website?
www.parkinsonic.com, PMD Alliance and Davis Phinney ambassadors.
How can others also become advocates for awareness?
DPF has a training for ambassadors, in English and in Spanish. If you don’t want such a commitment, be on the lookout for events near you, or for opportunities online.
In your opinion what is the key to effective advocacy?
Say it from the heart. It also helps if you have a politician or two in your network, I guess!
How can we better fundraise to support a cure for Parkinson’s?
I no longer fundraise to support a cure, but to help PwP have a better quality of life, and to encourage research in women and other underrepresented communities.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I’m very wary of alternative remedies, such as the use of herbal remedies, esp. when used without medical supervision.
I’d be lost without my Pilates teachers and my physical therapy team.
Why should people who don’t have Parkinson’s care about this?
Because we all end up fighting disease at one point in our lives. Because not talking about disease and death only increases and worsens our fears, and stigma.
Have you had any family members or relatives affected by Parkinson’s disease?
Nope, I’m the first one.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I didn’t want to be here either.