Hint: Information for refugees can be found here
Medication for ukrainian cf patients Liveblog
project information
The war of aggression by Russia on Ukraine has shocked all of us. Many Ukrainians had to flee their homeland spontaneously and are now in one of the neighboring countries such as Poland or Hungary. The situation for the refugees is chaotic, and comprehensive health care is not guaranteed. This is especially problematic for people with chronic illnesses such as Cystic Fibrosis (CF), who depend on daily medication that is essential for survival. In addition, there are still people in active war zones who are unable to leave their homes and flee from this destructive war due to lack of medications and equipment.
Therefore, the Cystic Fibrosis station of the Mainz Children’s Hospital, together with Atemspende e.V., is collecting money to provide medication for Ukrainian Cystic Fibrosis patients. The drugs are purchased in Germany and are then distributed locally. The project is carried out in close cooperation with the Polish CF Society, which has already provided us with a list of necessary medications. Dr. Krystyna Poplawska, senior physician of the CF station in Mainz and chairwoman of Atemspende e.V. is responsible for the project.
Information for donations can be found here Spenden
Please include the key word „Ukraine“ in your bank transfer
What medication is needed? (04.03.)
People with CF depend on a daily intake of medications that are essential to their survival. The supply of these essential medicines is currently not ensured for fleeing Ukrainians with CF. Atemspende e.V. is collecting donations to provide the following medications:
Pancreatic Enzymes: Due to CF, the function of the pancreas is greatly reduced. Enzymes needed for digestion, especially of fats, do not reach the digestive tract. Therefore, people with CF must take additional pancreatic enzymes with every meal containing fat. Without these medications, full meals cannot be eaten, and malnutrition quickly results.
Inhalants: Cystic Fibrosis causes progressive mucus buildup in the lungs. To control this mucus and stabilize the function of the lungs, many patients require multiple daily inhalations.
Liver Medications: Because CF also damages the liver, people with CF also need to take liver medications daily.
Vitamin Supplements: The vitamin balance is also often disturbed in people with CF, and supplemental vitamin administration is important to stabilize important body functions such as the immune system.
Emergency Antibiotics: People with CF are more susceptible to infections due to their disease. Therefore, it is essential to provide antibiotics in oral form and by infusion, especially for fleeing people who are particularly vulnerable to further illness due to stress and cold.
Inhalation and Infusion Equipment: Special equipment is needed for inhalation of medications, which is lacking in refugee shelters. In addition, special equipment is also needed to administer infusions.
Mobile Oxygen Equipment: People with CF, in whom the damage to the lungs is already far advanced, depend on a supply of supplemental oxygen in order to breathe properly. When these people have to flee their homes to escape the war, they are especially dependent on oxygen to make the difficult journey to a safer place. This requires mobile oxygen equipment, which is currently not widely available to those in need in Ukraine. So, in order to enable these people to escape, it is essential to procure mobile oxygen equipment and bring it to the people who need it.
Important Note: We are very happy about the great willingness to donate. However, we are unfortunately not allowed to accept donations of medicines. All medications are purchased by us from pharmacies.
arrival of the first medications (05.03.)
The first order of medication arrived in Mainz yesterday (04.03.2022). It includes pancreatic enzymes and vitamins.
Further orders / deliveries are planned over the next few days.
As soon as the first load is complete, we will bring it to the refugees.
According to the current plan, in order to meet the great need, we will have to make several new orders and deliveries over the next few months. Donations are therefore also urgently needed over the next weeks / months!
Update of our current plan (07.03.)
Our current plan of action is to use the donations to purchase additional medications over the course of the week.
This will be done in consultation with the Polish CF association and a contact person in Ukraine.
Together with them we will decide how to invest the current donation amount most effectively and which medicines will help the local people the most.
On Friday, March 11, Dr. Poplawska and Mr. Vogel will bring the medicines to Poland.
From there, distribution to refugee shelters and delivery to Ukraine will be organized with the help of Ukrainian drivers.
We will continue to report on social media and our website about progress and the situation in Poland.
news from charkiw (08.03.)
Today, we received great news from Charkiw!
The city in eastern Ukrain is heavy contested and under constant Russian shelling.
Nevertheless, an aid delivery with medicines (presumably from a so less contested part of Ukraine, none of our deliveries yet) has reached the city!
To show the situation on the ground authentically, we decided to show you the original message from our contact person.
Names and personal information have been removed for the protection of the persons and replaced by a [].
I want to tell you about a miracle! A car with Creon arrived in KHARKOV !!
IN KHARKIV !!!
[] personally (no staff, who is in the bomb shelter, who left) met the car.
Thanks to the efforts of parents who could get to the center, Creon was dismantled and now it is being handed over to those who are in Kharkiv and the Kharkiv region.
Worked quickly.
Everyone understood that it was necessary to act quickly.
Tomorrow, due to air strikes, this medical [] center may no longer exist.
I bow before [].
She is 86 years old for a moment.
Professor, world-renowned [] and DOCTOR and Human with a capital letter.
orders for the medication (09.03.)
The medicines for the first delivery have now been ordered from several pharamarcies, including the pharmacy at Mainz University Hospital, the Anker Pharmacy in Weisenau, and the Central Pharmacy in Steinbach. They will be delivered to the Uniklinik tomorrow. We also received a donation of two oxygen devices from the company Oxycare! Thank you very much for this great donation, the devices are urgently needed in Ukraine and will enable two people with an already severely deteriorated lung function to breathe normally again!
medication delivery (10.03.)
Today, all medicine has been delivered! Pari provided us with three „Europaletten“ of inhalation devices and equipment! Thank you alot for the donation! This will allow patients in Ukraine to inhale on a regular basis and thus stabilze their lung function!
support from bodenheim hilft! (10.03.)
The big donation amount allowed us to purchase a lot of medication for the first delivery! Additionally, we received the devices from Pari and Oxycare! This required us to change the previous plan of transporting the medicine in our car. To our great reliev, a organisation from Bodenheim stenned in and offered us to deliver the medication for us! The organisation nicht reden, machen! organizes deliveries of humanitarian goods to Ukraine and will transport our medication to the border tomorrow!
Members of Atemspende e.V. will bring the delivered medication to Bodenheim, where they are stored until their transport tomorrow.
labeling the packages (10.03.)
The sheer amount of medication in our first delivery is outstanding! Five „Europaletten“ of medication will be transported to Poland. All of the packages need to be sorted, labeled and packed. We sign every packet with the adress of our contact person to ensure that everything will be delivered correctly and nothing is lost. The entire delivery will contain over 70 packages! nicht reden, machen! not only allows us to use their storage facility but also organised two drivers for us, that will deliver our packages directly to Miss Bartnik at the polish-ukrainian border!
loading the medication (10.03.)
In the evening, Bernd, who will bring the medicines to Poland for us, comes to the warehouse and the transporter is loaded with the five pallets. Bernd together with a fellow driver, Ute, will leave tomorrow morning at 3 o’clock in the direction of Poland. They will bring the medicines to Jaroslaw to our contact person, Mrs. Monika Bartnik. She will receive the medicines and store them on site until Mrs. Poplawska and Mr. Vogel arrive on Saturday to coordinate the further distribution to Ukraine.
departure in mainz (11.03.)
Mrs. Poplawska and Mr. Vogel leave for Poland around noon. They will transport the two oxygen devices and the medicines that need to be cooled directly to Poland in their car. They will be accompanied by Mrs. Poplawska’s husband, Mr. Poplawski. The first stop will be at the Czech border, from where we will continue our journey to the Ukrainian border after an overnight stay the next morning.
While the car is loaded and our three drivers are on their way to Poland, Bernd and Ute have already made a good part of the way.
arrival in poland (11.03.)
Gegen 19 Uhr kommen Bernd und Ute in Polen an. Sie werden von Mitarbeitern vor Ort empfangen und laden gemeinsam die Medikamente und Geräte aus. Wir können Bernd und Ute gar nicht genug danken, dass sie diese lange Reise von 16 Stunden Fahrt pro Strecke auf sich nehmen, um die Medikamente dort hinzubringen, wo sie gebraucht werden! Ihr seid einfach tolle Menschen!
Die Medikamente sind jetzt sicher in der Lagerhalle verstaut und warten auf ihren morgigen Weitertransport in die Ukraine.
Around 7 p.m. Bernd and Ute arrive in Poland. They are met by local staff and together they unload the medicines and equipment. We can’t thank Bernd and Ute enough for taking on this long journey of 16 hours to get the medicines to where they are needed! You are just great people!
The medicines are now safely stored in the warehouse awaiting their onward transport to Ukraine tomorrow.
Transport to Ukraine (12.03.)
The onward transport of the medicines to Ukraine takes place in several steps. First, employees from the Polish CF organisation Matio, led by Vice Chairman Pshemek Marshalek, bring the medicines from Mrs. Bartnik’s warehouse to a Polish-Ukrainian border crossing. There we join them and together we pass the border crossing. In the area between the borders, two Ukrainian drivers are waiting for us with a truck. Together we load the medicines and equipment into the truck, which immediately sets off for Lviv in Ukraine. There, the medicines are received and sorted by our contact person, a Ukrainian doctor. Then she coordinates the deliveries of the medicines from Lviv to the CF patients all over Ukraine.
arrival of the medication in lviV (13.03.)
The medicines have arrived safely in Lviv! They are now unpacked, sorted, partly repacked and prepared for further transport to the patients. Unfortunately, transport to many areas of Ukraine is difficult because of the war, but the local people are doing everything they can to get the medicines to where they are needed as quickly as possible.
meeting with miss bartnik (13.03.)
Mrs. Monika Bartnik, together with her association Mukohelp, is instrumental in organizing the aid deliveries for CF patients in Ukraine. She receives deliveries of medicines from all over Europe and organizes together with Matio the further transport to Ukraine. During our meeting she told us that there is still a need for many medicines in Ukraine, but that our delivery will already help many people. We conducted a short interview with her, which we will translate into German and upload in the days after our return to Germany.
She will continue to serve as our contact person on site and support us with the next deliveries!
visiting matio (13.03.)
Our biggest help on site is the Polish cystic fibrosis association Matio. Without the great help of Matio, the project would not have been possible in this form. The association is based in Krakow, where we were able to meet the chairman Pablo as well as the vice chairman Pshemek.
The association not only coordinates the delivery of aid to Ukraine, but also cares for the support and distribution of refugee Ukrainians with CF in Poland.
In cooperation with contacts in Ukraine, the association compiles lists of needed medicines and the locations of patients in Ukraine. They also compiled the list of medicines that we delivered.
Matio delivers initial care for refugees with CF, organizes their accommodation and health care in Poland and coordinates their onward travel to other European countries. The initial provision of medication to refugees is enormously important for people with CF because they depend on a daily administration of medication. Many also require inpatient treatment in hospital, which Matio also helps to coordinate.
We also talked about the onward journey of patients to Germany. In the next days and weeks Atemspende e.V. will help to ensure that as many people with CF from Poland as possible can travel on to Germany to receive safe accommodation and good health care in one of the German CF centers.
We want to thank Pablo, Pshemek and the whole team of Matio, who are doing a great and essential work for people with CF!
supporting a cf patient (13.03.)
In Krakow we could also meet Anastasia, who fled Ukraine with her mother and is now being treated as an inpatient in the hospital in Krakow.
We talked with her about her health condition and her onward journey to Germany, which can probably take place already this Thursday! The Matio Association will pay for her a plane ticket to fly from Krakow to Frankfurt. Here, she will be picked up at the airport and together with her mother will be taken care of by a family near Alzey. Her health care will be provided by Mrs. Poplawska with the Mainz Cystic Fibrosis Outpatient Clinic.
visiting a polish orphanage (14.03.)
The next stop of our trip is a visit to a Polish orphanage, where many Ukrainian children, who had to flee without parents, are accommodated. Ms. Poplawska spoke with the director of the orphanage and talked about support possibilities. The orphanage is especially in need of equipment that can help translate from Ukrainian to Polish. In addition, it would be helpful to purchase new equipment for the orphanage’s playground, because the current equipment dates back to the Soviet era and some of the children have too little space to play.
situation in poland (15.03.)
At this point, we would also like to briefly discuss the general situation in Poland. People in Poland are showing enormous willingness to help, Ukrainian flags can be seen in many places, information is posted in Polish and Ukrainian, and the situation in Ukraine is constantly reported on TV. On the Polish highways, you can see a large number of vehicles packed to the top with aid supplies and heading towards the border. According to our impression, the support for the refugees works very well despite the precarious situation on the ground, the people in Poland help with a naturalness and dedication that really impressed us. Thank you to the helpers in Ukraine, Poland and the rest of the EU!
arrival of the first medications (15.03.)
We are very happy that the first medicines have arrived at the patients in Ukraine! The photos show two Ukrainian children with CF, who have received a part of the medication of our first delivery and whose supply is thus ensured for the next weeks! This is an important first step, but to maintain the supply for the two children and all other people in Ukraine with CF will remain a great challenge!
planning the second delivery (15.03.)
After the first delivery arrived well in Ukraine, we have already started planning the second delivery. This evening, Mrs. Poplawska spoke on the phone with our contact person in Lviv and discussed the further need for medication. Currently, more emergency antibiotics in oral form and as infusion medication are needed.
Therefore, we are already planning the second delivery of medicines to the Ukrainian border. Our current plan is that we will send the medicines again to Mrs. Bartnik and she will organize the further transport to Ukraine. How the delivery will take place and whether someone from Atemspende e.V. will accompany / carry out the delivery is still being planned. In any case, we are very grateful that we have such reliable local contacts who can support us in the planning and receive the medicines.
