Members of Italy’s national confederation for Parkinson’s share their proudest moments from the past two decades, and look forward to future developments
Parkinson Italia (PI) has celebrated its 20th anniversary, with a special day of events planned to mark the occasion on 27 October 2018. The EPDA spoke to one of Parkinson Italia’s founders, as well as to past and present members of the Parkinson Italia Board of Directors, to hear some of the association’s highlights since it was founded in 1998, and its plans for the future.
Pia Gabrielli, one of the original founders of Parkinson Italia
“I have been involved with Parkinson’s for 40 years, since my husband was diagnosed with the condition. He has moved from young-onset Parkinson’s to advanced Parkinson's, and had one of the first deep brain stimulation (DBS) operations in Italy. Together we experienced problems on a daily basis, and found almost nonexistent answers, both by neurologists and the public body, regarding the quality of life of people with Parkinson’s (PwPs) and us carers.
“So, in 1990, together with my husband and seven other people, I became a promoter and founder of Italy’s first Parkinson’s association, the Parkinson Association Trento. I have been a vice-president, president, a secretary for several years, and now by choice I am simply a member. The main objective of the association is to be a concrete reference point to give voice and response to the needs of PwPs and their family members, focusing on the person as a whole.
“Since Parkinson Association Trento was created, other regional associations have been formed across Italy, with whom I have always shared our common problems. It was precisely because of this fruitful exchange of ideas, and need to achieve common objectives, that we felt a national confederation should be formed. This body represents the problems and needs of all the PwPs and their families at an institutional level, leaving autonomy with each association. It was founded by the Trento association, together with the Parma, Rome, Genoa, Grosseto and Reggio Emilia associations, and I am still very proud of our long-sighted intuition.
“I’m even prouder of the fact that since starting with the original 6 members, there are now 21 members across Italy, with more than 10,000 people involved.
Parkinson Italia has given voice to those who have no voice, in dialogue with the scientific community.”
Antonino Marra, Parkinson Italia president
“The Parkinson’s community in Italy is fragmented, and there are many provincial associations that have difficulty communicating with one another. Parkinson Italia collaborates with AIP (Associazione Italiana Parkinsoniani, another Italian confederation of Parkinson’s associations) to facilitate a common dialogue with institutions. We wanted to seek and develop more what unites us rather than what divides us, and communicating proved to be easier than we assumed.
“Our priority is to help PwPs gain access to rehabilitation treatments, psychological care and to the anti-Parkinson’s drugs that are often unobtainable in Italian pharmacies. However, these goals are useless if the extent of the Parkinson's problem is not highlighted first: how many people with Parkinson's are there in Italy? Research suggests between 250,000 and 600,000, and this uncertainty affects the level of funding dedicated to research and social management of the disease.
“Each year, we hold a national meeting for the member associations’ representatives, and a Conference of Presidents to highlight the issues of the Parkinson’s community. These meetings represent the strength of the dialogue created by Parkinson Italia and include help with funding to encourage the participation by representatives from remote areas.
“The 20th anniversary of Parkinson Italia will not be limited to a celebration and nostalgic memories. It’s certainly a ‘thank you’ for the work done by those who preceded us – including founder Lucilla Bossi – but it will also create the conditions for a new Parkinson Italia, addressing the needs of our members. This will mean implementing the projects created by the confederation, such as the code of ethics and the manifesto of Parkinson Italia, being involved in the National Plan of Chronicity, the White Paper, and much more.”
Our priority is to help people with Parkinson's gain access to rehabilitation treatments, psychological care and to the anti-Parkinson’s drugs that are often unobtainable in Italian pharmacies. However, these goals are useless if the extent of the Parkinson's problem is not highlighted first
Giulia Quaglini, vice president of Parkinson Italia
“I have been married to my husband Lorenzo, a PwP, for 46 years, and I have taken care of him for 23 years. This experience inspired me to create a Parkinson’s support group in my local area in 2003. I am currently responsible for the Association Parkinson Insubria, founded in 2007, and I was elected vice president of PI during the Assembly in Bari in 2011.
“Right now, Parkinson Italia’s key objectives are to address the changes required by the Third Sector Reform which is currently taking place in Italy. We are particularly committed to driving the inclusion of Parkinson's disease in the National Plan of Chronicity.
“Every meeting with the confederate associations is an important moment to offer new tools, suggestions and opportunities for growth and training. In celebrating the 20th anniversary, we want to show gratitude to the six founding associations with a video highlighting their work. Associations from Veneto, Emila Romagna and Puglia will also present projects showing the implementation of PDTAs (Diagnostic Therapeutic Assistance Plans) for Parkinson's in their respective regions.”
Lauretta Schiavoni, board member
“I live in Ancona, in the Marche region, where I am the secretary of the Parkinson Marche Association. I am also secretary for the Parkinson Italia Board of Directors, and more recently, treasurer as well.
“I first encountered Parkinson's in 1997 when my mother was diagnosed. I remember my mother, my family and I felt rather unarmed in the face of the diagnosis, and the future scared us. Fortunately, we have a good neurologist, who helped us to understand.
“I decided that if I wanted to help protect the rights of my mother and other PwPs, I had to engage directly. So, I became part of the regional association Parkinson Marche, which subsequently became a member of Parkinson Italia, and I’ve been part of the PI Board of Directors since 2006.
“Over the years, Parkinson Italia has grown a lot, creating its own code of ethics, and its reliability and credibility is now recognised by all the stakeholders. Its achievements have included the creation of new associations, running popular events and the Parkinson's White Paper, which reveals what Parkinson’s is and what needs to be done, in collaboration with different universities and the Istituto Superiore di Sanità.
“Parkinson Italia is also part of working groups related to chronic diseases, with the participation of the Ministry of Health, and actively collaborates with other associations that deal with health and citizens' rights.
“By organising meetings for people (rather than the classic scientific conference) we’ve tried to create a growing awareness, addressing the rights of the PwPs. I believe only by uniting all the forces of the Parkinson’s community can we achieve our common goal: improving the quality of life of PwPs, their families and carers.”
I decided that if I wanted to help protect the rights of my mother and other people with Parkinson's, I had to engage directly
Andrea Tagliabue, board member
“I was diagnosed with Parkinson’s in August 2015, after several years of trying to determine the cause of scattered tremors and pains.
“I became part of the Parkinson Italia board in April 2017, after I met Giulia Quaglini at the Association Parkinson Insubria in 2015. As soon as I learned about the disease, I looked for those who could support me in this new path in life. Giulia helped me to orientate myself and trained me, giving me the opportunity to help the association.
“What are the main challenges young PwPs face in Italy? The same as always. Scientific developments raise hopes for our expectations in treating the disease, but human evolution is not so fast. We have to create awareness that Parkinson’s involves different areas, from scientific research to social services. We can improve the lives of PwPs and their carers by communicating consistently, both with PwPs and with institutions and pharmaceutical companies.”
What are the main challenges young people with Parkinson's face in Italy? The same as always. Scientific developments raise hopes for our expectations in treating the disease, but human evolution is not so fast
Massimo Molinari, board member
“I have been directly involved with Parkinson’s disease for the past six years, and have been a member of Parkinson Italia’s Board of Directors since November 2017. I volunteered because I consider it important to collaborate and find solutions to make the life of PwPs easier. Awareness of how important our work can be for each person can motivate us to carry on.
“Our goals as an association are also to facilitate relationships and opportunities to share among PwPs. To encourage the understanding that through education and information we can bring about social participation.
“It is important to inform people directly involved with Parkinson's that everyone can do their part – it’s not just about asking or waiting, but you can participate to improve your own life. We want to show that Parkinson's can teach us action is the best defense.”
Did you attend the Parkinson Italia 20th anniversary event? Are you involved with your national Parkinson’s association? Email email@example.com and tell us your stories.
The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.