The World Duchenne Organization is close to families affected by Duchenne and Becker MD in Ukraine. We urge Ukrainian families to contact us. Please send any information, updates and requests to [email protected].
Foundation 29 has developed a web app called Relief Ukraine for mobile. This application connects rare disease patients from Ukraine with medical needs with organizations distributing medical and pharmaceutical aid. The patient or physician in Ukraine registers and fill their medical needs, especially the drugs needed, and location (not compulsory). Then, WDO receives the information on a Dashboard and activate and tries to help.
WDO published stretching and exercise videos for Duchenne in Ukrainian. The videos are originally created by Lindsey Pallant, Neuromuscular Physiotherapist at the Regional Neuromuscular Team Leeds General Infirmary and PTC Therapeutics in collaboration with Duchenne UK. We are grateful for them to allowing us to share the content and make it available in Ukrainian.
A trailer of a documentary titled ‘Help has no borders’ on the emergency in Ukraine is launched. We started this storytelling path in Poland, at the borders, where many refuges arrive. We interviewed families, clinicians, patients representatives, volunteers.
WDO visited the borders in Poland (Medyka) where the refugees arrive. We are interviewing refugees, patient organizations and volunteers to hear their stories and share their experiences.
Nicoletta Madia coordinator of the DMD Emergency Program, travels to meet and work with our organizations and families in the Czech Republic and Poland. Daily news will be shared on our official pages.
We are currently supporting three important paths:
- Food and medicines to the community in Ukraine. This has been done two days after the beginning of the conflict.
- Money to DMD/BMD families still in Ukraine to survive: this action is coordinated with the local organization.
- Money to DMD/BMD refugees: this action is coordinated with the DMD organizations working in the different countries and welcoming the Ukrainian families.
In addition to donations by PayPal, a Facebook Fundraiser is collecting money for families affected by the Ukrainian conflict. Within two days, over 50% of the target goal of EUR 20.000 is already achieved.
The World Duchenne Organization has activated the DMD Emergency program for the victims of the Ukrainian conflict by cooperating internationally with humanitarian aid.
World Duchenne Organization is preparing some products to be sent to the Ukrainian people. We are participating in the global solidarity action to stay close to all the people who are suffering now because of the war. We believe that helping each other is the only way to make the difference. And change the world.
“You are not alone”. This is the message of the World Duchenne Organization to the Ukrainian Duchenne and Becker families. The entire world community is experiencing hours of great pain due to the ongoing conflict in Ukraine.
“As part of the World Duchenne Organization we are very concerned about what is happening in Ukraine. We embrace the entire population affected by the conflict and in particular our Duchenne and Becker families”, declares Elizabeth Vroom (President).
The conflict has an even greater impact on families who have children with complex diseases such as Duchenne and Becker muscular dystrophy.
“We are in constant contact with Ukrainian Duchenne and Becker patient organizations, listening to their needs and what they are living. We are distant but united and close”, says Nicoletta Madia, community coordinator and project manager of the DMD Emergency Program.