Amsterdam February 28, 2023 – World Duchenne Organization launches the documentary Help Has No Borders as part of the DMD Emergency program. Over the last years, the world has faced dramatic emergencies that have changed the lives of millions of people. This Rare Disease Day, the World Duchenne Organization launches the documentary Help Has No Borders on the emergencies experienced by the Duchenne communities.
How is the emergency experienced by families who have children and young people with complex pathologies such as Duchenne muscular dystrophy? The World Duchenne Organization is responding to these needs through and their DMD Emergency Program in partnership with the Duchenne Data Foundation.
“Our program was born in 2020 following the explosion of the port of Beirut in Lebanon. Many families were without the devices necessary for the survival of our children and young people with DMD. We took immediate action to stay close to the community with an direct and concrete response”, comments Elizabeth Vroom, president of World Duchenne Organization.
“Emergencies are a tragedy for everyone, but for our families who have children with limited mobility who need many tools to survive, things get even more complicated. A drama within a drama. After this disaster we decided to keep the program up and running, being ready for immediate action in case of another disaster. Unfortunately since then our community faced two new disasters of a scale we could not have imagined.”
“At the time of an emergency, the program is activated based on needs and in collaboration with local associations”, continues George Paliouras, president of the Duchenne Data Foundation. “We do everything in our power to send basic necessities, medicines, tools and provide support to families”.
Instant aid that crosses borders to stay close to communities in extreme need. A help that is visible in the documentary that is launched today named “Help has no borders”.
“The idea of making a documentary was born as a response to the activation of the program”, says Nicoletta Madia, director of the documentary and program coordinator. “We traveled to the Czech Republic, Poland to near the border with Ukraine, Italy and Lebanon to monitor the support. We also collected direct testimonials from our communities. In the Czech Republic, Poland and Italy we met healthcare professionals caring for Ukrainian refugees, our refugee families ready to reinvent their lives. In Lebanon we have seen the rebuilding from the rubble of a disaster and the commitment of our families to recover together”.
As of the beginning of February, the DMD Emergency Program is activated in Turkey and Syria, as a response to the devastating earthquake. Nicoletta Madia is in contact with local patient organizations to coordinate sending resources and providing support.
The documentary “Help has no borders” is now available on Facebook, Instagram, LinkedIn of World Duchenne Organization and Duchenne Data Foundation. It is also visible on Youtube.
https://youtu.be/S1QAbUJ4WVI
The World Duchenne Organization is a global umbrella organization of national patient organizations dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to inform parents and people living with the condition around the globe.
Duchenne Data Foundation (DDF) is a worldwide collaboration in order to enhance the understanding of the course of Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD), the effects of treatments, the needs and preferences of DMD/BMD patients and all other aspects relevant to the lives of DMD/BMD patients.
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 Duchenne Data Foundation and the World Duchenne Organization. So far, it has provided support to the DMD/BMD community after the Beirut Blast in Lebanon, the Ukrainian war and the Turkey/Syria earthquake. The program is supported by Sarepta Therapeutics, PTC Therapeutics, Foundations, Organizations and private donors.
Duchenne and Becker muscular dystrophy are rare genetic diseases defined by muscle weakness. Muscles are getting weaker over time. This ultimately affects the ability to breathe as well as the function of the heart, as the heart is a muscle too. There are over 250.000 people worldwide living with Duchenne and Becker muscular dystrophy. People born with Duchenne and Becker need care from many specialists throughout their lives. With the current standards of care, people living with Duchenne can live into their early 30s and beyond.
Published on 13 March 2023.
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