If the situation in Ukraine isn’t desperate enough, spare a thought for those with the added burden of Huntington’s Disease. Danuta Lis, president of the Polish HD Association and Bea De Schepper, vice president of the Belgian Huntington Liga (Flanders) have been leading efforts to help them.
As fighting broke out and patients had to be evacuated from Kiev, Poland’s specialist HD treatment centre TriVita agreed to take in Diana (33) who needs round-the-clock care. Transport was sent to the border to collect Diana, her mother and her 10-year-old daughter. Diana’s treatment at the centre south of Krakow, is just one example of the support which is being subsidised by the Polish Huntington Association. Katerina (12) has late-stage Juvenile HD. She and her mother Daria are being taken care of in Warsaw.
Danuta herself is hosting another HD family, Karina (32) and her six-year-old son. Danuta also collects basic necessities such as food and clothing and goes twice a week to help refugee centres.
Normally, the Polish association only provides financial support for Polish HD families, but as Danuta said “Extraordinary times call for extraordinary measures”. She has reached out to other associations and would like to thank the private individuals who have generously responded as well as the George Huntington Foundation in Germany, the HD Society of America and the Guthrie Centre, also in the US.
For a number of years now, Bea De Schepper of the Belgian Liga (Flanders) has been sending trucks to Eastern Europe, full of surplus supplies and equipment from Belgian doners – special HD beds and chairs, walkers, wheelchairs etc. She now has a truckload which will be sent to Poland, courtesy of the Belgium HD association and stored there ready for onward shipment to Ukraine as soon as the situation allows.
According to Bea, the Belgian association has already spent many times more than budgeted for transport of this type but says they have no choice. “I hope other HD organisations show solidarity, so that we can together help alleviate the tremendous fear and suffering of these families who are living in the most awful conditions”.
Many aren’t in a position to evacuate and for all those who remain, the situation is desperate. There are families without work or even food. Dedicated doctors try to keep in touch with their patients but that’s not always possible, as telephone networks or internet access is destroyed. Doctors and nurses have been killed and others have been conscripted into the army.
The fear is that the war will drag on. Whether they remain in Ukraine, or escape to neighbouring Poland, the demand for support from the Polish HD association is more than they can manage alone. If you would like to make a contribution, please use the account details below and reference “Help for Diana” or “HD Ukraine” with your payment. If you have any queries, please contact Danuta Lis +48 669 111 144.
Polish Huntington’s Disease Association
ul. Rekodzielnicza 17 A, 02-267 Warsaw
IBAN Numbers for payments in Polish Zloty, Euro or USD:
PL 20 1160 2202 0000 0000 7882 5845 – (PLN)
PL 61 1160 2202 0000 0000 7882 8017 – (EUR)
PL 09 1160 2202 0000 0000 7882 8371 – (USD)
BIC/Swift Code: BIGBPLPWXXX
Bank Millennium S.A., Harmony Center, ul. Stanislawa Zaryna 2A Warszawa, Poland.
Reference: “Help for Diana” or “HD Ukraine”.
Thanks in advance for your generosity.