Phuong Luu and Giang Nguyen are mothers of Danh Nguyen (11) and Lam Dam (18), who are affected by Duchenne Muscular Dystrophy (DMD) and are living in Vietnam. They started to lead an existing community with Duchenne families in Vietnam that was founded ten years ago by Doan Nguyen, a Duchenne patient who passed away. Nowadays, the community has over 300 members across the country. Duchenne Vietnam successfully applied for the WDO Aspiring Membership, joining the World Duchenne Organization.
In a virtual call, Phuong is sharing her story. “My son received the diagnosis Duchenne 5 years ago, when he was 6 years old. Coming from a country where DMD is not known to many people, it was difficult to find useful and reliable information on Duchenne. Fortunately, I found the Vietnam Duchenne Community, the World Duchenne Organization and other groups where we could find support and guidance.”
Phuong Luu continues: “We have been together for a decade to fight against this fatal disease, to raise our voice and influence many aspects of our children’s life. What we see in Vietnam is that doctors are giving mixed and seemingly inaccurate information. Duchenne families are very confused. They don’t know where to look for truth-worthy information, what research is ongoing, if their child has a chance for treatment, which medical checks and care need to be provided. Even what medical equipment can support their bones and muscles. At that moment, we did not know whom or which organization can provide us with this kind of information and keep us informed.”
Duchenne Vietnam‘s mission is to provide people living with Duchenne with the right to live a meaningful life. A life where Standards of Care are applied, no barrier for education exists, and dreams can come true. Phuong concludes: “Life is not about how long it is, but rather how it is experienced.”
She adds: “In line with our mission, we (with the help of other organizations and volunteers) have performed some outstanding activities over years. We were organizing physical therapy training for parents, giving finance support to disadvantaged families, translating the latest “Family Care Guidelines” with the permission of Treat-NMD. Moreover we were organizing webinar series with clinicians & experts inside and outside the country, promoting domestic researches, accompany non-governmental organizations to social activities towards disable people and much more.
In the following years, the group continued to grow out to a tightly knit network. “Our community grew to over 300 members across Vietnam. This year, we wanted to apply for membership at the World Duchenne Organization. By doing so, we aim that our children will have more hope for a safer and better life. However, we found out we were not eligible to apply for full membership. At that moment and due to COVID-19, we were not an official non-profit organization and could not proceed to register.”
WDO Aspiring Membership
This is when Duchenne Vietnam found out about the WDO Aspiring Membership. This type of membership is created for groups that are interested, but not eligible to become a full member. WDO Aspiring Members receive guidance on how to set up an official not-for-profit organization. Phuong: “We then decided to apply to this type of membership, successfully. By joining the World Duchenne Organization as Aspiring Member, we are moving forwards on the tough path of roses, which hopefully heads to the light.”