Simona Sinesi

Never Give Up transforms how young people, families and communities (teachers, peers, health care professionals and institutions) understand and respond to eating disorders, de-stigmatizing an issue buried in Italian society. Simultaneously it is changing the way treatment is accessed and offered, building networks of health professionals to improve how treatment is accessed and provided.

In Italy, only 10% of the 3 million people suffering from eating disorders actually turn to a specialist for support. Simona is working to change this stark reality by offering an innovative approach to overcoming issues around weight, food and body image. Through Never Give Up, an organization which she co-founded along with her sister, Stefania, Simona’s goal is to create a strategy that is tailored towards those who are most affected by eating disorders--namely teenagers and young adults. Her program makes it easier for them to seek professional help from leading health specialists and guides them on a journey towards self-discovery. At the core, Simona and her team believe that these serious public health issues must be addressed by focusing on the root of the problem.

According to the World Health Organization, anorexia and bulimia are the leading causes of death for disease among young people between the ages of 12 and 25. Through her initiative, Simona is developing a strategy specifically directed towards addressing this issue among teenagers and young adults, to raise the awareness of the need for treatment, so people will seek it more timely and more. After all, they are the ones who are disproportionately affected by these issues. Using targeted communication strategies, Never Give Up introduces an innovative advocacy and support campaign to places where teenagers and young adults gather, such as schools, universities, concerts and events. Simona and her team engage teenagers and young adults through a short audio visual experience, which is a powerful emotional tool to start a conversation in unconventional spaces. Participants are invited to come in a mobile cabin, where they can experience a powerful input of images in a semi-private setting. They are then invited to think whether they or any of their peers may benefit from receiving more information or guidance on the issues. They can leave contact details and be approached later on. De-stigmatizing eating disorders also changes the way peers and families rend to a sufferer among their friends or family members.

Traditional rehabilitation programs for those with food disorders are centred around physical rehabilitation and the development of a healthier relationship with food. Little to no time or attention is directed towards the patient’s personal characteristics or finding ways to nurture the potential of the patient. Never Give Up is turning this model on its head, reconciling these two important aspects of recovery. The program focuses not just on physical health and creating healthy habits around food but also on the patient as a whole. Guided by the knowledge that patients must often come face to face with cold, hard truths about themselves and their personal habits when dealing with food related illnesses, Never Give Up provides them with the tools to address them, thereby transforming the hardships and pain that patients have experienced into fuel and inspiration towards creating a healthier more stable life. In doing so, Simona is also expanding treatment research and access, by creating networks of professionals and linking them together as well as pioneering a new residential treatment model.

Eating disorders are the first cause of death for diseases among teenagers and young adults. In relation to this issue, one of the most difficult challenges to tackle is the sufferers’ difficulty to ask for help. It is highly common, in fact, that sufferers try to hide their problem when in front of their families and friends, strengthening the barriers created by the eating disorder and fostering the isolation process triggered by the disease.

According to an article from Journal of Mental Health published in 2016, eating disorders and body image issues are highly stigmatized, subjecting those to ignorance and unfounded prejudices. This, along with a lack of awareness surrounding these issues makes patients and their families feel isolated, alone and misunderstood. It is this sense of incomprehension that in many cases sharpens the problems that trigger the pathology.

The difficulties related to accessing help certainly have to do with a lack of health facilities across the country but also with a lack of information and effective communication strategies to guide the most vulnerable populations towards a path of healing. It is essential that family members, friends and those around them are given the right tools to help them recognize the warning signs.

The classic approach to the treatment of eating disorders is strictly focused on rebuilding--or in some cases fostering the relationship that the patient has with food. Rarely traditional approaches keep into account the psychological and social causes of eating disorders, and therefore the relevance of the support that could be provided by peers and families during treatment.

The stigma surrounding this problem often leads to a misconception of the problem itself, which in this way can be belittled and misunderstood.

As evidenced by data collected by the University of Milano-Bicocca eating disorders are subject to trivialization: it is a common belief that those who suffer are not in need of treatments or that they can recover autonomously. This turns more than often to be a damaging factor for personal relationships.

It has been demonstrated that an early diagnosis is a very important element to promote healing: it is estimated that early intervention, within the first three years of the manifestations of eating disorders, can increase the chances of recovery up to 80-90%.
When it comes to eating disorders, getting an early diagnosis is not so easy. These are ego syntonic disorders, so patients are not aware of being ill, nor do they ask for help and might even refuse it. This, combined with the lack of facilities in the Italian territory and the need for adequate and effective communication strategies to be directed not only to patients but also to the sensitization of families and teachers, represents the major obstacles that prevent the timely diagnosis and therefore the reduction of deaths related to eating disorders.

With traditional approaches, little room is left for personal growth, development and discovery of sufferers’ talents and soft skills. This is essential to building a healthy life post therapy.

Simona works with teenagers and young adults, between the ages of 12 and 25 as it is the population group most affected by eating disorders.

NEVER GIVE UP is based on an innovative multidisciplinary approach. It is characterized by an evidence-based methodology shaped by a scientific advisory board, including her sister, which is identifying treatment modalities focusing on research, prevention, early intervention, and the treatment of eating disorders. Core of her modus operandi is the focus upon talents rediscovery.

Simona reaches out to teens and young adults through the Never Give Up Experience: a program that works to break down the stigma that surrounds asking for help by providing free, on-site support from a Never Give Up psychotherapist team. Part of this program is promoted in crowded meeting places such as concerts and festivals, engaging people through a moving audio and visual presentations. Simona created the audio-visual presentation by using a page from the journal of a patience which is red by a famous Italian actor. While listening to the audio, people who are taking part in the experience are alone and stare at a plate that is animated. The goal of the Experience is to create awareness around the issues that young people with food related disorders face on a dally, and to provide support for their families, friends and loved ones.

After going through the Never Give Up Experience people have several ways to reach out for help. If they send an email the are ensured that the mail is answered in 24 hours and then within two weeks, individuals are in care of a psychotherapist.

When the Never Give Up Experience is held inside High Schools, a sensory, relational and emotional food education workshop is held to raise awareness among parents, children and primary school teachers.

Simona linked treatment and awareness rising by giving former patient the opportunity to share their experience through a cycle of workshops created under the TED license (www.ted.com) geared towards children between the ages of 12 and 18. The program was created to allow them to share their ideas on the topic of food, weight and body image (https://ed.ted.com).

Simona is now working with Dance and Ballet Schools where the risk of being affected by eating disorders is higher, to have shared rules and values about nutrition and body image.

Her next step is to create NEVER GIVE UP HOUSES (now in incubation phase) is a network of centres in Italy which, using a social enterprise model, aims to propose a substantial change in the way to approach eating disorders, offering early diagnosis, treatment, post-treatment, training and research.

Through the development of advanced training and research programs, Simona wishes to further improve existing approaches to eating disorders. As Simona has demonstrated, her strategy is highly replicable both in Italy and abroad. Eating disorders are a wide-spread global phenomenon, especially in developed countries.
The project meets its objective of preventing eating disorders through a range of activities in different locations throughout Italy and strategically designed to reach the young people at risk. Thus far, activities and programs have been financially supported by donations (private and CSR) and sponsorships.

The Never Give Up Houses project is still in its early stages. The goal is to develop a network of centres in Italy that substantially change the way people approach Food and Eating Disorders. The intention is to raise awareness through advocacy campaigns, encourage early diagnosis, provide treatment and post-treatment resources including training and research. Simona won two prizes, which has allowed her to support her work financially and hit the ground running. In order to spread the word about Never Give Up, Simona patiently waited bureaucratic times in order to get a national wide education campaign on television, radio, etc., involving celebrities such as singers, footballers and others. More in general, since the start of her entrepreneurial journey, Simona demonstrated outstanding capabilities in mobilizing resources, through fundraising, auctions, campaigns, etc.

According to data collected by the organization, since 2014, about 5,000 people have been involved in the activities of Never Give Up. About, 70% of those are teenagers and the remaining 30% are young adults, parents and community members. Roughly 1,250 of 5,000 were put in contact with a psychotherapist and 313 of those with an eating disorder started a treatment program.

The organization has had a significant impact when it comes to raising awareness about the importance of asking for help when dealing with eating disorders. They did so through an integrated communication campaign for the Presidency of the Council of Ministers, which included press, spots on television and on the radio as well as a piece directed by Oscar-winning director Danis Tanović and staring actress Aurora Ruffino (https://bit.ly/2IKEwlc). The campaign was a great success, and thanks to that they were able to raise more awareness through a national telethon which aired in September 2018.

Simona won GETIT! Call for impact project launched by Fondazione Cariplo and Università di Roma3 Social Start Up Call. Eighty influencers from the sports, cinema, and art worlds spread the word about Never Give Up, lending their voices in support of Simona’s work.

Simona was born in Bari, in Southern Italy in 1978. She was raised in a middle class family and she took her studies very seriously. During adolescence, Simona saw her close friend suffer from an eating disorder--and refuse to ask for help, which put a strain on the relationship between them. This experience had a profound impact on her and would ultimately shape her life trajectory significantly.

During her teen years she was very much influenced by her Philosophy teacher who inspire her to expand her horizons as much as she wished to explore life and find solutions.

She played basketball in a youth team and eventually was convened by the First Team coach to be part of the leading team as a sub. While she barley played a game, she decided she wanted to have an active role in the team and used to be active in team building activity and cheering her team mates. That was one of those moments in which she realized that it’s a matter of will to be a changemaker.

Simona went on to have a long and successful career in Marketing and Communication. She worked for big multinational companies such as Coca-Cola, Barilla, Unilever and Sony. During a video shoot while at work, Simona crossed paths with Oscar winning director, Danis Tanovic. He was well known for his film No Man’s Land. Their meeting made it clear to Simona just how meaningful it can be to use one’s professional and personal skills to do work that benefits society at large. After her sister, a health professional opened her eyes to the widespread issue around individuals with eating disorders unable to ask for help, Simona remembered her friend from childhood--and felt all the more moved to work for the cause.