Sometimes we hear the words “Down syndrome,” or perhaps see in public places the faces of some people. We do not know what it means: Is it diseases, or is it genetic or other things? Many people are ignorant of this fact, but modern science has taught us that there is a category among the groups of society called people with Down syndrome.
Osama Alsafi is the secretary general of the Emirates Down Syndrome Society, and we had a meeting with him to learn more about the health condition and about his work.
Alsafi is an engineer and holds a master’s in urban design from the University of Sydney. He is the director of the Rail Right of Way Department in the Roads and Transport Authority in Dubai. He joined EDSA as a volunteer in 2011. Alsafi is supporting the nonprofit association by giving his experience in management and strategic planning.
Alsafi said Down syndrome is a genetic and hereditary defect that affects some groups of society at a rate of one per 400 to 800 births. It is not an emergency disease that can be cured. Rather, it is a chromosome defect that is not called a disease, but something that accompanies a person, such as the pigment that appears in the skin, hair, or even in the features or eye color.
Alsafi said that the Emirates Down Syndrome Association is a nonprofit association of public benefit established by families of people with Down syndrome to carry out their role in community awareness of this group and also in coordination with the official authorities in order to contribute to supporting families with Down syndrome and rehabilitate this group for a better life for them.
This association was established by a group of families in 2006. It started with a limited beginning such as gatherings in homes until the establishment of this association was formally declared by the Ministry of Community Development.
EDSA Strategies
EDSA strategies are based on five strategic directions. These five strategic directions are community awareness of Down syndrome, rehabilitation of people with Down syndrome, support for families with Down syndrome; community integration, whether it is educational integration, general community integration, or health integration; and resource sustainability.
About the International Day of Down Syndrome
Alsafi said that official authorities in the world concerned with health aspects agreed to specify the day of March 21 of each year to be World Down Syndrome Day.
The reason for choosing this day is that the number 21 is the chromosome number for people with Down syndrome and there are also three sorrows, and therefore this date was also associated with Mother’s Day, the mother who sacrifices and presents miracles for her sons and daughters, especially if there are challenges of this kind.
Some people have wrong convictions, of course, that these people are not normal, and that they should be isolated from society, and this is all false talk, Alsafi said. Rather, they are at the height of innocence and meekness. A picture of aggression, but perhaps they are talented and owners, meaning creations in many fields, so the association proved through its sports and artistic activities that there are talents that the association was able to adopt, develop and highlight in society. There are painters who participated with paintings in many exhibitions. There are athletes who participated in the Olympics, whether they were in swimming or bowling, and they won gold medals at the local, regional, and global levels.
The association also carries out various family programs, consultations, and seminars in order to face or address the challenges that families face, whether they are social, health, or educational challenges.
Alsafi gave one last piece of advice to the community. He told all members of society in all their fields to be active and cooperative with the association. The association extends its hand and provides cooperation with all groups. The private sector can contribute, whether it is sponsorship or financial support, or even according to the nature of the fields and specializations in which these agencies and service agencies operate. The government can provide a lot, whether through collective awareness or the facilities that it can provide to Down syndrome and their families.
“We have provided employment to a group of people with Down syndrome, so that after they were dependent on their families, they became breadwinners, and they also receive fixed salaries and are committed to with a wonderful and elaborate productivity, praise be to God Almighty,” Alsafi said.
About the author: Noor Aslafi studies Integrated Strategic Communication in the College of Communication and Media Sciences at Zayed University in Dubai.
Yulia Medvedeva edited this story.
