Inaugural Muscular Dystrophy (MD) Club for Vietnam in May 2013!
On the 10th May the very first meeting of the Muscular Dystrophy (MD) Club of Vietnam was held at the National Hospital of Pediatrics in Hanoi, Vietnam. The Club was attended mostly by parents, and they started the day looking very apprehensive, sad and depressed... To date there has been almost no support for families of children living with MD in Vietnam, so this was a huge step forward for the MD Community of Vietnam. Over 100 families attended the MD Club meeting, with most of those representing young boys with Duchenne Muscular Dystrophy (DMD).
With thanks to funding from MDNSW, CLAN was proud to present all families attending on the day with a new educational resource on DMD. The booklet was translated into Vietnamese, and shares a lot of information on DMD for Vietnamese-speaking families... It represents a fantastic step forward for DMD management in Vietnam. Special thanks must also go to Paediatric Geneticist and MD Specialist Dr Kristi Jones and Occupational Therapist, Helena Young - both from The Children’s Hospital at Westmead, Sydney, Australia - for volunteering their time and energy... In partnership with their fantastic colleagues at the National Hospital of Pediatrics, they helped to make this inaugural MD Club meeting a great success.
Two amazing young people Doan (Mr) and Van (Ms), who are both affected by MD, spoke of their experiences and gave advice to fellow children and young people living with MD and their parents. They emphasized the importance of attending school and being given the opportunity to engage fully in life. These young people both have careers and were later elected President and Vice President of the newly formed MD Club of Vietnam. Doan is planning to set up a web site that will include a discussion forum for the group. There were volunteers from all over Vietnam willing to be on the new MD Club committee.
Lectures were given by Dr Kristi Jones and Helena Young and they willingly answered questions from the audience. Many questions related to genetics and scientific research into MD.
By the end of the day, parents and young people were inspired and encouraged to do all they could to ensure young people living with MD in Vietnam enjoy the highest quality of life possible. The new MD Community of Vietnam now has the resources and connections they need to move forward in a strong and empowered way... Indeed, the parents looked invigorated and encouraged as they left NHP that day - a very different group to those who started the day.
CLAN is very thankful to Dr Quynh from HCMC and Drs Dung, Thao, Ngoc and Khanh from NHP.
We would also like to acknowledge the contribution of Dr Yen Thanh Mac, the CLAN Vietnam Project Manager who was involved in much of the organization and produced newsletters for each meeting.