Local patient organizations and communities are not always equipped with the right tools and support in case of an emergency. This has a severe impact on the families of people living with Duchenne and Becker muscular dystrophy. The DMD Emergency Program was started in 2020 to provide direct aid to patient organizations in a direct emergency. In addition to initial aid, the program aims to provide long lasting support.
The initiative is a collaboration between the World Duchenne Organization and the Duchenne Data Foundation . So far, it has provided support to the DMD/BMD community after the Beirut Blast in Lebanon (2020), the Ukrainian war (2022), the Turkey/Syria earthquake (2023). and the floods in Brazil (2024).
Support Duchenne families in urgent situations
May 2024, Brazil is facing severe floods affecting nearly 1.5 million people, including Duchenne families. Karina Zuge of the Associação Baiana de Distrofia Muscular (ABDM) is coordinating local efforts to support these families, providing essential devices, planning rebuilding programs, and organizing multidisciplinary medical checks.
The World Duchenne Organization, in collaboration with Duchenne Data Foundation and ABDM, has activated the DMD Emergency Program to offer necessary assistance and financial support.
February 6, 2023, a devastating 7.8 magnitude earthquake hit Turkey and Syria. World Duchenne Organization, since the first hours, has been in contact with the local organizations in order to check the conditions of the Duchenne and Becker MD families. The DMD Emergency Program has been immediately activated in order to provide resources and support to the families.
“As soon as the news reached us that Turkey and Syria were hit by the earthquake, we sought contact with our families to ensure they were safe,” said Nicoletta Madia, community manager of the World Duchenne Organization. “We immediately offered support and help through the DMD Emergency Program. With this program we are coordinating direct humanitarian support for families with Duchenne and Becker in the areas affected by this devastating earthquake.”
The entire world community is experiencing hours of great pain due to the ongoing conflict in Ukraine. The conflict has an even greater impact on families who have children with complex diseases such as Duchenne and Becker muscular dystrophy.
The World Duchenne Organization is collecting funds to provide resources and support to patient organizations that are coordinating refugees and local families with Duchenne and Becker muscular dystrophy.
In the year of 2020 in Lebanon, the effects of the large explosion ‘Beirut Blast’ at the city port and the Covid-19 pandemic resulted in an emergency situation. Many families needed medical equipment to take care of their sons, who suffer from DMD/BMD.
The Duchenne Data Foundation and the World Duchenne Organization set up a support program for local communities that has global supervision through a strategic global capacity building program, starting with the emergency in Lebanon.
Aida Adra, Founding member, LAND for Hope Lebanon
“It was so smooth to handle the donation, and we were so excited to see what we have for our kids, like Christmas gifts. Thank you to everyone who participated in this operation. Proud to be a part and member of the World Duchenne Organization”
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