Throughout the world, an average of one child in 7.000-10.000 is born with a protein metabolism disorder. Most of these children have a complex word written in their DNA: phenylketonuria (PKU). Explaining PKU and its day-to-day management through the eyes of patients and their families is the aim of the project Mevalia #PKUHeroes
Every year, neonatal screening safeguards the future of thousands of people suffering from PKU, with early diagnosis allowing patients to immediately begin the nutritional therapy that prevents the expression of the disease.
Treated patients develop normal cognitive and motor functioning, allowing them to lead a normal life.
Explaining PKU and its day-to-day management through the eyes of patients and their families is the aim of the project Mevalia #PKUHeroes: four video interviews preceded by an introductory promo, featuring the various protagonists as they narrate their own experiences.
The entire campaign is promoted by Dr. Schär.
Since 2012, the South Tyrolean company has been developing amino acid mixtures and low-protein foods for the treatment of phenylketonuria, distributed in more than 30 countries under the brand name Mevalia.
“It’s the first time I’ve heard of a project of this kind in 28 years.” Francesca, who suffers from PKU, is delighted to take part in the Mevalia #PKUHeroes campaign, her goal being to spread a positive message about the condition, and to do so she has decided to get directly involved in this initiative, which aims to increase awareness of the everyday aspects of this disorder.
Enthusiasm and a desire to let others know about this condition are the traits shared by the four #PKUHeroes, who have committed to sharing their lives, their experiences, their relationships with others, and all the baggage of emotions they have gathered over the years.
The initiative is perfectly in keeping with the values of its promoter Dr. Schär, which for 35 years – initially in the gluten-free product sector, before expanding its activity to include that of Medical Nutrition – has based its ethos on the concepts of responsibility, progress and wide product availability.
The first supporter of the Mevalia #PKUHeroes is Nikos Charalampopoulos, Executive Director of the company’s Medical Nutrition division: “The relationship with its customers is important for any company. But for us, given that our products support them from birth throughout their whole lives, this relationship is even more crucial. Creating a space where they can recount their experiences seemed not only appropriate, but perfectly natural.”
The campaign is the brainchild of Stefania Cosimi, Communication Manager of the Metabolic Nutrition division: “The desire to open themselves up to the world and to recount a life which differs from the norm in various ways, the legitimate wish to gain a better understanding of the company whose foods they eat every day, and finally, the joy of sharing an emotional experience with others who are facing the same obstacles, are the factors which have driven the Mevalia #PKUHeroes to put their trust in us and take part in this initiative. We consider it a further step in building consolidating a solid and lasting relationship with the whole PKU community.”
A PKU community which is growing every year. The parents of newborns with PKU have a special place in the words of all the #PKUHeroes, who wish to virtually support and embrace them at this most critical time.
Mother of four-year-old PKU sufferer Gabriele who shows all the vivacity and curiosity of a typical child of his age, Gabriella has an earnest message for all new mothers who find themselves having to deal with this illness, and who fear for the future of their child. “Come with me and I will show you my son, this is the most important thing you need to see right now. And you’ll see that things will get much, much easier.”
The video interviews will be published weekly on the Mevalia and Dr. Schär social media platforms, starting on the 12th of November.
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