UPDATE ON DMD AND OI CLUBS IN VIETNAM

UPDATE ON DMD AND OI CLUBS IN VIETNAM

The Duchenne Muscular Dystrophy (DMD) Club of Vietnam began in May 2013 at the National Hospital of Pediatrics (NHP) in Hanoi, through the collaboration of NHP, visiting staff from the Children's Hospital at Westmead (CHW) in Sydney Australia, generous support from Muscular Dystrophy NSW (MDNSW), families of young people living with muscular dystrophy in Vietnam and CLAN (Caring & Living As Neighbours). 

The President and Vice President (Van - pictured right) were elected at the inaugural DMD Club meeting. Both are young people affected by Muscular Dystrophy. Their achievements in a very short period of time are many, both for their immediate club and also for the other CLAN Support Groups in Vietnam.

Doan, the President, has established an excellent web site for the DMD Club as well as organising and participating in a road trip where young people and their families who have difficulty travelling to Hanoi for treatment and Club meetings were visited at home.

OI and DMD Clubs Working Together

The Osteogenesis Imperfecta (OI) Club of Vietnam was launched in late 2011, and together with the DMD Club, both Support Groups participated in the International Day for Disability in Hanoi in December 2013.

Van, the Vice President of the DMD Club, has written a proposal to educate a group of parents of affected children so that they in turn can support and educate other families. Her model was developed so that it would offer support to both DMD and OI Communities. With the assistance of Mekong Economics, we have succeeded in obtaining a grant from the Australian Embassy in Hanoi for $9,000 to enable us to carry out Van’s proposal.

Education Days for DMD & OI Families

As part of this project, an initial education meeting was held in April of this year and was well attended by the parents of children and young people who are living with DMD and OI in Vietnam. The meetings were supported by medical staff from Vietnam. A follow up meeting will be held in early July and this meeting will be attended by specialist doctors from CHW, Australia. The visiting experts from Australia's Children’s Hospital Westmead include:-

  • Dr Craig Munns – a Specialist Paediatric Endocrinologist.
  • Dr David Little – a Paediatric Orthopaedic Surgeon
  • Ms Lucy Kevin – an expert Genetic Counsellor
  • Ms Verity Pacey -  a specialist Physiotherapist
  • Ms Kathrine McIntosh – a Physiotherapist specialising in Orthotics 

Our HUGEST thanks must go to Prof David Little for his AMAZING fundraising efforts for the 2014 DMD & OI Club activities - he has been our champion... not many people are brave enough to have pies thrown at them whilst wearing their best suit!

CLAN is proud to be partnering with so many amazing international champions in our collaborative partnership with the DMD and OI Communities of Vietnam as they continue to drive change for children and young people in their own country. CLAN is committed to multi-sectoral engagement that focuses on community development as a sustainable means to optimising quality of life for children living with chronic health conditions in resource poor settings, and we are so grateful to have so many people travelling the journey with us! 

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