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Updated: Apr 5, 2022

Our Fragile X Society here in the UK is part of a growing network of countries dedicated to supporting the Fragile X Community and I thought that you would like to know how our colleagues in Poland are responding. Joanna Kulisiak-Kaźmierczak from the Polish Fragile X Society sent me this update

The invasion of Ukraine by Russia is a shocking event, which has upturned the lives of many millions of people in Ukraine and there have been huge concerns expressed that adults and children with disabilities have been particularly badly affected.

There are 2.7 million people with disabilities in Ukraine, according to the European disability forum, while Inclusion Europe estimates there are around 261,00 people with intellectual disabilities.

Our Fragile X Society here in the UK is part of a growing network of countries dedicated to supporting the Fragile X Community and I thought that you would like to know how our colleagues in Poland are responding. Joanna from the Polish Fragile X Society sent me this update.

“"We help Ukraine"… these words accompany every Pole on a daily basis. It is not only billboards in the streets or in the media, it is a heartfelt commitment from each of us.

When we learned that the war had broken out in Ukraine, we were terrified. Ukrainians, women and children, travelled to the Polish border. Often they only had documents with them. They didn't have any things. They came without luggage. Luggage and suitcases were left on the road because they were too heavy. They walked over 35 km to the border with Poland. When they reached the border they were exhausted and cold and still had to wait from 12 to 30 hours for the border check.

Polish aid to the Ukrainians was immediate and spontaneous.

Poles themselves, among their friends, organized collections of food, clothes, mittens and other warm things. And they took them in private cars to the border, and on the way back they took Ukrainian families from the border and brought them to Polish cities.

Mum Renata and dad Grzegorz took part in such an initiative, they are parents of twins with Fragile X syndrome, who are in our Foundation "Fra X Family".

The "Potrafię Pomóc" Foundation was also involved in helping, at which the Center for Rare Diseases was established. Bartłomiej Skrzyński, helped in the Ukraine from the third day of the war. Their driver / volunteer, whose name is Maciek, transported people with disabilities and their relatives from Ukraine (Lviv, Tarnopol and Winnica). So far, over 350 people have been evacuated, including families with rare EB and SMA diseases. Moreover, the Potrafię Pomóc Foundation coordinates the collection of gifts and money in Poland. Thanks to our efforts, we have already managed to obtain over 3 lorries of gifts, worth approximately PLN 600,000.00. Currently, they are coordinating the delivery of 2 trucks to Kiev and Zaporizhia from Procter & Gamble.

In addition to this activity, in Poland, points for refugees were organized at railway stations, where they can register, receive the help of a language interpreter, medication, accommodation and food. There are also volunteers from various non-profit (charity) organizations and some who volunteered to help.

Not so long ago, there were many people and their pets in the buildings of railway stations. There were dogs, cats, guinea pigs and more. Now there are fewer and fewer of them, because some of these people continue to travel to Europe, some stay in Poland and live in hotels and rooms prepared for them.

There is a lot of work in these hotels for refugees from Ukraine. They all work as a volunteer there.

Lots of things have to be organized there. Clothes, food, toiletries and a place to sleep. People who feel sick are taken to a doctor or pharmacy. These people include pregnant women and young children, and most speak only Ukrainian. Often their illness is psychological, shock, stress.

Mother Joanna and father Maciej, parents of adult children with Fragile X syndrome and their friends, got involved in helping in one of the hotels for refugees from Ukraine in Wrocław.

As part of this aid for refugees, many donations in kind were collected also from donors from Germany and America. A playroom for children was created in the hotel, help during illness, transport or finding a new home, accommodation in Poland and abroad was provided.

As part of the activities of our Foundation "Family Fra X", we are in contact with a Ukrainian family diagnosed with Fragile syndrome X, who currently live in Poland."

Joanna Kulisiak-Kaźmierczak


At the Fragile X Society here in the UK, we do want to help. As well as planning to give a donation, I've already contacted the International Red Cross to let them know that we are available here to give our support to any refugees that come into the UK that are affected by Fragile X.

Pete Richardson

Managing Director

Fragile X Society


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