The Lionheart Ability Leaders International Foundation (LALIF) has urged both Federal and State governments of Nigeria to officially recognize and support the annual Global Usher Syndrome Awareness Day.
This appeal was made during a press conference following a public awareness rally organized by the Foundation in Abuja.
Speaking at the event, Solomon O. Okelola, the founding Executive Director, called on the Nigerian government at all levels to officially recognize the third Saturday in September—specifically, Saturday, September 21st, 2024—and continue to observe this day annually. He emphasized that while the day does not need to be marked as a public holiday, it should be a recognized effort by the government to support Global Usher Syndrome Awareness Day and join international efforts to raise public awareness about the syndrome and its associated dual sensory loss. The ultimate goal, he noted, is to reduce the incidence of the syndrome and, ideally, eradicate it entirely.
Okelola stated, “There is a pressing need to equip medical practitioners across the nation with practical knowledge and skills related to genetic testing and counseling for identifying, preventing, and managing Usher Syndrome. Additionally, ensuring the availability of necessary equipment for proper testing is crucial.”
He warned, “Failing to address this issue means that future generations risk being affected by Usher Syndrome, potentially leading to an increase in cases of Deaf-blindness.”
Okelola further highlighted the challenges faced by persons with Deaf-blindness in Nigeria, stating, “Many of these individuals live in poverty, deprived of their fundamental human rights, and are often hidden away by family members who believe that such individuals cannot contribute meaningfully to society. However, it has been proven that, despite the significant challenges they face, with appropriate support and accommodations, people with Deaf-blindness can learn and thrive.”
The Foundation also called for collaborative partnerships to spread essential knowledge and skills among medical practitioners nationwide, including those still in training.
Additionally, LALIF seeks partnerships with the Federal Ministry of Information, the National Communications Commission, the Nigerian Broadcasting Corporation, and various media outlets to raise awareness about Usher Syndrome across all levels of society, including grassroots communities.
“We are eager to see the implementation of these commitments and look forward to building practical and effective partnerships with government agencies at all levels for the benefit of all citizens, including future generations.”