Fondazione A.C.A.RE.F. for the support of people and families living with ataxia syndromes was set up in Ferrara in 2012. It is a daily commitment that involves research projects, rehabilitation and awareness-raising campaigns to improve the life of those coexisting with this group of rare and hereditary genetic disorders. For FARE INSIEME Charity, Lucrezia Lanzani interviewed Nicola Piu, corporate fund-raiser manager at Fondazione A.C.A.RE.F. ETS
FARE INSIEME CHARITY is the spin-off of the FARE INSIEME project dedicated to the presentation of some onlus and non-profit associations with roots in the area around Bologna, Ferrara and Modena and that carry out extraordinarily important and crucial work for the entire community. Here are some of their stories.
by Lucrezia Lanzani*
“Support: help, aid - either material or psychological - represented by people or things”
In 2012, in Ferrara, a group of people gathered together to turn a solidarity idea into a Foundation, and decided to set up Fondazione A.C.A.RE.F. ETS. The aim is clear: the situation of families living with people suffering from ataxia syndromes - a group of rare and hereditary disorders that progressively hinder the control of bodily movements, and especially SCA1 (Spinocerebellar ataxia type 1) and SCA2 (Spinocerebellar ataxia type 2) - was becoming better known.
“Spinocerebellar ataxia is a degenerative disease with a difficult and often rapid progression. The life expectancy is 10 to 15 years from the onset of the first symptoms. It is a disease that does not involve just the afflicted person, but the entire family,” explains Nicola Piu, corporate fund-raiser manager at Fondazione A.C.A.RE.F. ETS.
The Foundation was initially set up as an organisation providing assistance to patients and their families. Then an important turning point came about in 2016 when the research lab was inaugurated at the University of Ferrara. From then on, the Foundation decided to focus on scientific research in a structured way. Today, in addition to research, the assistance part has also been reintroduced with renewed vigour. “Patients have to shoulder considerable costs for their families of between €2,000 and €3,000 just for assistance, caregivers, in-home nursing or structures providing ongoing support. Then there is the cost of transportation, physiotherapy, physiatry and speech therapy.”
In Italy, it is estimated that there are around 5000 people living with a form of hereditary ataxia, and the foundation has counted around 100 patients in Emilia-Romagna alone. Guaranteeing complete and ongoing assistance is therefore extremely complex. That is why the “SI FA - Sostegno Integrato alle Famiglie con Atassia” project was born, which involves all-around support for transportation, medical exams, rehabilitation therapies and psychological support also for caregivers. “The situation of caregivers is extremely difficult from a psychological point of view. Many people feel alone or find themselves in a bubble caused by what is happening within their family. We cannot care for patients alone and forget about those who look after them,” stresses Nicola Piu.
Fund-raising involves various activities. The main campaigns are carried out at Christmas and Easter, plus there are the 5x1000 donations. “Last year, over 1,200 people chose to assign their share to the Foundation. And we also have crowd-funding campaigns, as well as recurrent donors, in addition to occasional donors and companies that support our activities as top donors. As part of the Easter campaign, we will sell chocolate eggs at €8 and artisanal Easter bread at €15. The entire proceeds will support research activities and the SI FA project. The more we can collect, the more people we can reach,” highlights Nicola Piu.
Fondazione A.C.A.RE.F. ETS is made up of four employees and a board of volunteers. The people that support the work of the organisation every day include Stefania Roselli who manages all the activities of the operative branch in Pescasseroli, and Elena and Anita Govoni who provide the essential administrative and bookkeeping support needed for the organisation to function. However the “beating heart” of the foundation are the volunteers: around twenty people who make most of the activities throughout the territory possible and are carried out with passion and dedication, from the organisation of events, markets and dinners, to awareness- and fund-raising campaigns. “Their daily commitment represents the human engine that breathes life into the Foundation and makes it possible for it to have an active presence in the community,” concludes Nicola Piu.
Once the support in Emilia-Romagna is consolidated, the objective is to extend the assistance to nearby regions as well. A small reality with a clear objective - to leave no one behind.
*Lucrezia Lanzani is a former student of Liceo Steam Emilia, who is now studying Communication Science at the University of Amsterdam. She is eighteen years old and has always been interested in social issues. For more than three years, she has been volunteering in various organizations in her community.
https://podcast.confindustriaemilia.it/
Read the other interviews
