What does the Duchenne Campaign Iran hope to achieve long term? (From Iran)
- Increase funds to provide ongoing advice, support, equipment and urgent medical supplies to needy DMD children and their families
- Recruit volunteers and appeal to local companies to donate materials and provide a means of getting DMD children safely to school
- The contact details for the Register will be added to the TREAT-NMD data base and possibly the DuchenneConnect Register. It is hoped that the addition of the Iran DMD Register onto the Global databases will increase the opportunity for International companies conducting research and clinical trials to collaborate with Iran based Neurology Specialists and researchers to participate in clinical trials within Iran
- Ongoing educational campaigns to raise awareness of DMD among the public and also health, education and social care professionals to increase recognition and early diagnosis of the condition to enable individualised care plans for DMD children to be put in place
- Organise more subject specific workshops to train Health Professionals, teachers, social workers and dieticians on optimising the care and quality of life of DMD children at all stages of the condition.
- Offer support and resources for the parents, carers and brothers and sisters of DMD children to help them understand the illness, increase awareness of their own feelings and increase resilience to protect their mental health. To reproduce the Booklet ‘Hey! I’m here too’translated into Farsi and utilise translations of other existing appropriate documentation and information with consent from the UK Duchenne Muscular Dystrophy Charities and other organisations
- To consider requesting the Iranian Ministry of Health to initiate a trial of a free National Screening Campaign of newborn babies for early detection of DMD. The newborn heel prick test utilises detectable DMD disease markers (raised levels of Creatine Kinase) that can be used in screening and subsequent diagnostic investigations. This test was used effectively in Wales UK for many years but was discontinued as at the time it was felt that there was no available treatment for DMD; therefore identifying children at birth did not lead to improved outcomes. Due to positive feedback and campaigning by parents whose DMD children were identified early in this way, combined with the advances and availability of effective new treatments to slow the progression of the disease, Professor Francesco Muntoni, Director of the Dubowitz Neuromuscular Centre at Great Ormond Street Children’s Hospital, London supports the Muscular Dystrophy UK campaign to reinstate Newborn screening.
- Toensure that all children suspected to have DMD have access to free genetic testing and other investigations (if required) to confirm diagnosis, identify the causative gene and enable them to be entered onto the Iran DMD Register and receive timely and appropriate support and care
- To raise funds for the provision of community clinics for Specialist Paediatric Neurological Physiotherapy, hydrotherapy and Occupational Therapy for treatment of all stages of DMD with the aim to prolong mobility in the early stages and reduce the incidence of complications in the later stages
- The option of English translation on the Home page when the Duchenne Campaign Iran website is developed and launched
What has the theDuchenne Campaign Iran Team achieved?
- It has established the first National Register of Duchenne children in Iran that now has 300 families listed.
- It has begun the process of utilising the TREAT-NMD registration documentation to ensure that the correct information will be available to National and International researchers and scientists who are working on new therapies to treat DMD
- As an NGO, it has begun the process of applying to be recognised by WANGO, the World Association of Nongovernmental Organisations www.wango.orgin order to optimise effectiveness of procedures by adhering to international guidelines
- It ran an awareness campaign from Tehran to inform the public about the early signs of DMD and encourage families with affected children to seek help and register
- Organised a workshop in Tehran run by a leading UK based Iranian Neurologist to educate families on the care of DMD children and the importance of physiotherapy techniques that can be carried out at home to reduce the onset of limb contractures and maintain mobility
- Raised Funds for the Duchenne Campaign by charitable means and distributes the funds raised by way of equipment and support to families in need
- Established a Telegram page to communicate with and inform families on all news relating to the support available from the charity and developments in the diagnosis and treatment of DMD
- SohrabKavir, a UK based film maker and Director who lost three of his brothers to DMD has spent 7 years of his life making a documentary film about the plight of Duchenne children in Iran. He is currently in the process of editing a film trailer that, in combination with the film website, will be used to raise International awareness of the Duchenne Campaign Iran and funds for the charity