In an effort to raise awareness about Usher Syndrome, a rare genetic disorder causing deaf-blindness, the Lionheart Ability Leaders International Foundation (LALIF) has led a public rally through Abuja.
The event which is part of the “Operation Stop Usher Syndrome” project, aims to educate the public and urge government action ahead of the Global Usher Syndrome Awareness Day on September 21.
Mr Solomon O. Okelola, the Executive Director of LALIF, led the march, emphasizing the need to educate the public about the causes, prevention, and management of Usher Syndrome.
Mr Okelola said, “We’re not just raising awareness, we are calling for action to ensure that individuals with deaf-blindness can access their fundamental human rights and contribute to societal development.”
The rally came to an end with a press conference at the National Commission for Persons With Disabilities, where the Group was received by Mr Lawrence Igemudia, Director of Social Integration on behalf of the Executive Secretary.
In a press statement, Mr Okelola called on federal and state governments to officially recognize and support the Global Usher Syndrome Awareness Day, observed annually on the third Saturday of September.
“Usher Syndrome affects millions globally, with a disproportionate impact on developing nations like Nigeria due to lack of awareness and medical resources,” He explained.
The Group also drew attention to the current plight of many Nigerians with deaf-blindness, who often live in poverty and isolation.
Citing the UN Convention on the Rights of Persons with Disabilities, the Group further called for increased understanding and accommodation for persons with deaf-blindness, noting that many of the Convention’s provisions remain inaccessible to affected Nigerians.
In response, Mr Igemudia promised to convey the message to the Executive Secretary and assured the group of the Commission’s willingness to collaborate on efforts to address Usher Syndrome and support individuals with deaf-blindness.