Alumna Elena Ravano Calheiros Launches Foundation for Rare Skin Disease
When JCU alumna Elena Ravano Calheiros’ twin daughters Leonor and Beatriz were born with a rare genetic disease, she and her husband knew from the start that they would do anything possible to find a cure.
Congenital lamellar ichthyosis is a severe skin disease that develops because patients lack an enzyme (TGM1) that is vital in creating the skin barrier. Only 1 to 2 people per 100,000 are affected by the disease, which causes permanent risk of dehydration and over-heating, as well as impaired eye function due to extreme dryness.
Elena, who graduated from JCU with a major in Political Science in 2008, and her husband Francisco, a diplomat, did many months of research and learned all they could about the disease. They came across the studies of a German team of dermatologists and biologists who had been working on a cure for exactly this type of ichthyosis for some years. In December 2017, the couple and their Italian dermatologist met with the German team to learn more about their work.
“This great team of doctors and researchers had developed Enzyme Replacement Therapy, but had to stop their work due to a lack of funds. Since the disease is so rare, big pharmaceutical companies do not invest much money. Therefore, with the help of our families, we decided to start a foundation in order to help the team advance their research, and get to the phase of human testing and distribution. Basically, we are raising money to help prove that this therapy is the cure we have been waiting for,” explains Elena. That’s how Comitato UFFI United for Fighting Ichthyosis – Amici per la Pelle was born.
Launched at the end of June 2018, Comitato UFFI aims to prove that the development of the therapy can be cost-efficient. The foundation started a GoFund Me campaign with the goal of raising 2 million euros. Fortunately, Elena’s previous experience working for international nonprofit organizations has paid off and in less than two weeks, the campaign has already raised €30,000. Recently Elena received the excellent news that UNITI Unione Italiana Ittiosi, the only organization working with ichthyosis patients in Italy, has just become a partner of UFFI.
Elena and Francisco, who currently live in Lisbon, are committed to making sure that their twins lead as normal a life as possible. “Leonor and Beatriz, who are going to turn two in October, are beautiful, full of life, energy, and curiosity. They love playing with other children at the park or at the beach but we must limit outdoor activities because of the risk of overheating and heatstroke. There are certain precautions that we need to take, like giving them two daily baths and applying cream throughout the day to make sure that their extremely dry skin stays hydrated,” says Elena.
“Amici per la pelle,” part of the foundation’s name, is a play on words in Italian, since it literally means “friends by skin.” In English, it can be translated as “best friends” or “friends for life.” According to Elena, these are precisely the kind of friends she made at JCU. “My friends from JCU, people from all over the world, have been helping me in many ways: by donating money, putting me in touch with experts, sharing my posts on social media. They have been incredible.”
Elena has many fond memories of her time at John Cabot University. “I think that JCU is a unique place because it mixes modernity with the ancient world in an international environment. I had amazing professors, some of whom I am still in touch with, like Professor Andrea Lanzone. But in addition to what I learned in the classroom, I learned to love what I do and to be passionate about my goals. Most importantly, I learned to embrace diversity and to let myself be enriched by it.”