Baschirotto Institute For Rare Diseases for Ukraine

The news coming from Ukraine are becoming worrying everyday.
The Baschirotto Institute for Rare Diseases (BIRD) in Vicenza, Italy, gives a safe shelter to ukrainian families.

Il Giornale di Vicenza, 30th March 2022

Wednesday 30 March 2022 – THE JOURNAL OF VICENZA
THE STORIES – Eleven of them were welcomed by the Fondazione di costozza
Four fleeing families become Baschirotto “home” communities
From research center to temple of emergency aid

By Franco Pepe
Giuseppe and Anna Baschirotto fight for rare diseases and all emergencies in life. The Costzza Institute, which is the seat of the Foundation named after his son Mauro, is a research center but also a temple of help. And, when the endless column of Ukrainian refugees fleeing their bombed-out land began, they came forward to the prefecture, to civil protection, to the CSV to say that they were ready to welcome. «There is an analogy – says Giuseppe – between them and those who suffer from a rare disease. And it is not just a metaphor. Even the sick are fleeing a war. Illness is a war. But a refugee is luckier. He can escape from the bombs. The seriously ill person is not. The bomb is wearing it. He doesn’t get rid of it. And it can explode at any moment “.
Today Giuseppe and Anna give food and home to 4 families who have fled from different areas. They have opened for this painful humanity the rooms that in normal times offer the parents of sick children who come here from all over Italy to make a diagnosis. Around Giuseppe and Anna a brood of 11 children. And, with them, three mothers and a grandfather. They didn’t know each other before, they had never seen each other, and now they do everything together from morning to night. Stories suddenly united by the alarm of the sirens, the roar of explosions, the lurking death, the race to safety. Giuseppe and Anna do not miss anything. And outside there was a solidarity contest. A TV, a washing machine, lots of clothes came as a gift.
Valentin, who in his life has always driven buses, comes from Zhitomyr, a delightful city in western Ukraine on the historic route that connects Kiev to Warsaw. He has a tremendous longing for him Ukraine. He does not see. time to return. The only joy now is to be with her daughter-in-law Svetlana and her beloved nieces, Alona, a student close to 18 who studies law and Victoria, a little ballerina who is 11 and dances in a complex. Venceslav, Svetlana’s husband, also a driver, remained in Zhitomyr to fight as a citizen-soldier. They gave him a rifle and now he is there, together with others like him who previously did not know how to shoot and what an enemy is, to defend his homeland.
Svetlana is 41 years old and the look of a teenager has grown quickly. “No. I have no more news of my husband. ‘ In Zhitomyr he ran a kindergarten for 400 children, and now he works as a cook in costozza, preparing typical Ukrainian dishes for everyone. “We saw the apartment buildings near our building being gutted by missiles and we knew we had to leave. First we hid in a village not far from Zhitomyr, but even there there were bombs, devastation, corpses on the street, and we couldn’t stay any longer. ” The long journey of hope. Fear tattooed on the skin. By bus to Poland, and; then, up to Vicenza.
An escape that lasted 4 days. Svetlana has always loved Italy. She had always wanted to come but certainly not in these conditions because she was forced by a mad invasion. «You Italians are wonderful people. Here they are giving us everything possible to make us feel good ». Vicenza has already entered their hearts even if the fear remained. When a plane passes over the skies of costozza, Svetlana feels a chill. Impossible to forget the roar of Russian jets that plant bombs, lightning, death, the houses devoured by fires.
And here are two sisters. Alona, 42, is pregnant. Next to her is Angela, one year younger. They fled from Dnipro, a city in eastern Ukraine, the third largest by population after the capital Kiev and Kharkiv. A dramatic journey. Overflowing wagons. People slept on the floor. Both have degrees in engineering. They work on Ukrainian railways. Alona as conductor has traveled dozens of times on the Kiev-Moscow line. “Our beautiful cities are destroyed. We have relatives in Russia. We were brother peoples. They, the Russians said they were our big brothers. We are a free and independent country. We want to remain masters of our destiny. We would never have believed that Putin would attack us. Zelensky is the best president in the world. We love him. I hope that God will help him to make Ukraine win ».
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La Voce dei Berici, 20th March, 2022

Sunday 20 March 2022 – THE VOICE OF THE BERICI
Baschirotto Foundation – The laboratories open their doors to researchers fleeing the war
The Rare Disease Cost Center offers accommodation and food and job opportunities to Ukrainian doctors and biologists.

By Vincenzo Grandi
An open door for those seeking refuge from war. Like many other realities in the area, the Baschirotto Foundation of Costozza di Longare has chosen to actively take the field to help the Ukrainian people, giving its willingness to host refugees fleeing Ukraine. The Foundation, engaged for over thirty years in the research and diagnosis of rare diseases, is ready to welcome in the spaces of its structure the families who are arriving but also to
Giuseppe Baschirotto and his family also lived as refugees during the Second World War.
“As a non-profit organization, our actions are always aimed at supporting the hardships and problems of people and, specifically, of those with a rare disease – underlines the president Giuseppe Baschirotto, soul of the Foundation together with his wife Anna -. In this dramatic moment we have decided to make our experience available to help families of refugees fleeing Ukraine, and in particular those with people suffering from a rare disease. We think we can be useful in the professional – management of problems that, otherwise, would be more difficult to deal with in normal family environments or in non-specialized institutions ».
Ukrainian families with cases of rare diseases will thus be able to find a safe and highly specialized refuge in the areas of Costozza, with adequate and specific skills for the necessary therapies and treatments. However, the Foundation has also decided to take another step towards welcoming. “We will open the doors of our research laboratories, doctors and biologists who are fleeing the war – adds Professor Baschirotto -. We are ready to offer them room and board and job opportunities through temporary scholarships. It is a way to go beyond hospitality and give these people an opportunity to feel alive and active even in a time of crisis, which has forced them to abandon their professional life. Here they could continue to devote themselves to research ».
“We make our experience available to help families on the run, especially those with people suffering from a rare disease”
Therefore, the one proposed by the Baschirotto Foundation is not just a temporary refuge: it wants to be a sign of hope and a window to the future. However, a sign that bears traces of a personal memory, as President Giuseppe Baschirotto tells us: «During the Second World War – he remembers – with my family we experienced firsthand what it means to be refugees.
We were hosted not far from home, but of that experience I still remember the suffering in leaving my home and my old life to go towards a future without stable points. In that case it was a family of three housing one of eight. The decision to open the doors of our institute today derives, therefore, from the desire to lend a hand also in memory of the hospitality that my family and I received in the past ».
Here then, already in recent days, the Baschirotto Foundation has not hesitated to communicate its availability to the Prefecture, the Municipality, the Region, Civil Protection, Caritas and Diocese and is now ready to open its doors to those who need to find hospitality and support.

The Baschirotto Foundation
“Research is the only real way to prevent. The times to see the results can be long, but we must never stop believing in research ”. In these words it is easy to read the trust and hope that accompany the founder of the Rare Diseases Foundation “Mauro Baschirotto”, born in 1989 in memory of his son Mauro, who died of a rare autoimmune syndrome: “A syndrome that we diagnosed after 25 years of Research”.
Precisely the possibility of giving a certain diagnosis to those suffering from a disease is one of the main objectives that the association pursues in its daily work. Thanks also to the institute of the same name, in Longare one of the main points of reference for the study, research, treatment and rehabilitation of those diseases that are almost always characterized by diagnostic and therapeutic difficulties, sometimes insurmountable and such as to impose a very high managerial and emotional burden on patients and their families.
“The social impact of rare diseases is far from negligible – they explain from the institute – both due to the fact that the number of patients affected is still significant, and because they almost always involve very serious damage to the patient. The institute’s policy is to acquire more in-depth knowledge on the subject, develop reliable diagnostic methods and tools, effective drugs, appropriate therapies and provide specific products for each pathology efficiently and sufficiently.

Il Giornale di Vicenza, 16th March, 2022

Wednesday 16 March 2022 – IL GIORNALE DI VICENZA
WAR STORIES – Welcomed, along with twelve other Ukrainian refugees, by the Bashkir Rare Disease Association in Longare
The four musician baby brothers escaped from the hell of the bombs
Maria, Annina, Olexij and Oiana, between the ages of 13 and 17, ran away with their grandmother, leaving their father and mother guitarist in their homeland. Solidarity competition to bring violins and piano

Maria, Annina, Olexij and Oiana. Three sisters and a brother, the oldest is 17, the youngest 13. Music is their life, but the last note they heard is the one that goes ra-ta-ta-ta. The bombs in Zitomir, their city 100 kilometers west of Kiev, began to fall last week. They were forced to flee. With grandmother. Without the mother, professional guitarist, and without the father, remained at home. And without their instruments: violins and piano. Lives interrupted, but at least safe: at the end of a long journey, the four found a safe haven in Longare. They and twelve other refugees fleeing the war in Ukraine, gathered by the Vicenza Volunteer Service Center, have been guests since last Sunday in Costozza in the structure of the “Mauro Baschirotto Rare Diseases Association”, former Don Calabria institute.
For the renowned research center, almost a return to origins. «The CSV asked us if we could host these people fleeing the war – explains Anna Baschirotto, vice president of the Association – and we have given our availability to the widest possible welcome according to our means. Our structure specializes in the study and research on rare diseases but at this point we made ourselves available to those who needed it. So on Sunday sixteen guests arrived. A grandfather with his granddaughter, four women, nine girls and a boy. If among the refugees who continue to arrive here in Vicenza there were professional figures, biologists or other, they could very well collaborate with our laboratory ».
Most of the refugees come from bomb-devastated Dnipro and Zitomir. The grandmother who arrived with her four grandchildren, all musicians, also comes from there. A passion transmitted by her mother Svetlana, a professional guitarist who remained in Zitomir alongside her husband. Maria 17, Annina 14, Olexij 13, all violinists, and then Oiana, 15, a student of the musical college of Zitomir, a promising talented pianist who has been playing since the age of six and has already made her debut as a concert performer in public, winner of various competitions.
Communicating is difficult, you succeed in hiccups in the intervals while filling out the many documents. The fact is that in just one day when news of this talented family of musicians spread, more than a few citizens of Longare came forward to offer their instruments for them to practice. And soon hopefully a concert dedicated to the Ukraine of these wonderful budding musicians, before their greatest wish is fulfilled: to return home.
In addition to these refugees, other people were hosted in the village: some in the rectory of the parish of costozza, others in the homes of private citizens and families linked to the “Il PonteMict” association of the Berica Riviera that they already knew well. Most of them are children who spend a month and a half here in the summer and 20 days at Christmas for rehabilitation stays, others are former children of Chernobyl who have now become adults but who have never forgotten their Italian families with which have always maintained a strong emotional bond.
“For the moment, given that the flow of arrivals continues and the number is destined to increase, the territory of Longare in the various hamlets hosts about forty people – declares the mayor Matteo Zennaro: above all women, children and young people, so after the necessary bureaucratic steps it will be necessary to start an integration process with schools. Some have begun to frequent them ».
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Il Giornale di Vicenza, 11th March, 2022

Friday 11 March 2022 – IL GIORNALE DI VICENZA
Territories – Bassano
The witness
The journey from Ukraine to Bassano. “The bombs were falling and I told the children it was the storm”

By Francesca Cavedagna
Twenty years ago, when she was the president of Caritas in Kiev, she accompanied the children affected by the Chernobyl radiation to Italy; today, at the helm of a foster home in the Ukrainian capital, he rescued his young guests with a trip that lasted over three days, partly spent on a train that took them to the border with Poland, crammed into wagons where they could not it was possible to turn on the lights and not even open the windows. Svitlana, 45, and her beloved children were on the bus of the Pettinà company, which took the first refugees to Bassano on Wednesday afternoon. She failed to save them all, those over 16 were held at the border by the Ukrainian militia who will now enlist them to fight. And when she thinks about it Svitlana can’t hold back her tears of desperation: “They couldn’t come with us, they had to stay and fight – she explains crying while she is still sitting inside the bus to check the latest papers for health records – All the boys of the family home are like my children, now I am in pain for them, I do not know if I will see them again. Looking at the children we were able to bring to safety is not enough to give me even a little peace “.
The buses organized by the solidarity network made up of the coordination of the Csv of Vicenza, the Otb Foundation and the Ponte Mict Odv, together with local institutions and over 30 associations, continue to arrive. Yesterday morning another 50 refugees arrived at the San Bassiano hospital, mainly mothers and children from a different family home, and more will arrive in the coming days. The drivers were supposed to load a group fleeing from Kiev, which however never arrived at the border and there is no news of its fate. Svitlana tells how their life was suddenly turned upside down by the roar of bombs. “I remember that at home on February 23 with the children we talked about the imminent resumption of school, of the spring that would soon arrive, with the cold that would finally give us a respite and we could go out and play – he explains – Instead on the 24th they started to bomb. It took me some time to understand what was happening, I could not understand that the war had really started. I took the kids and took them to the basement. I said they had to crouch for safety. They wanted to know what the loud roars that came from outside were and I said it was the fault of a bad storm and that it would soon pass. Instead the bombings continued for days. We have never moved. I called my cousin in Russia, told her they were attacking us. She didn’t believe it, she replied that I had to believe less the lies of the social networks. So I told her that bombs were falling on her head and I made her hear the noise. She fell silent, shocked. Not even the Russians are all on Putin’s side. We were hidden in the cellar for many days, we had no gas, electricity, or even water to wash ourselves. Food was very inexpensive. The children were petrified with terror ».
Then the situation worsened further. «On March 3 they called me to tell me that we had to escape immediately – Svitlana continues – The Ukrainian military came to pick us up, escorted us to the Kiev station. There, on a distant and hidden track, there was a train consisting of 13 wagons, full of people. We were told that a seat had to be occupied by at least two people, otherwise there would be no room for everyone. We left at 6. There was no light and it was not possible to open the windows. The convoy was not supposed to be seen by Russian planes, otherwise they would have bombed us. It was hard to breathe, we were too many and too crowded. My only consolation is that at least with the windows sealed, the children heard less the noise of the bombs. When there was a danger that the enemy would see us or that the bombings were too close, the train stopped. We made several stops. After a journey that lasted over a day we arrived at the border with Poland, finally safe. Except for three of my boys, who were made to stay to fight. I only managed to rescue six of them. ‘
Svitlana is convinced that the war will be won by Ukraine. “Our boys will never give up, and we will win in the end, but with what losses? With how many broken lives? she-she asks in tears-If NATO has decided not to close the skies over Ukraine, I pray that God does, otherwise everything of our beloved land will be destroyed “.
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