My name is Sulaiman Jassim Al Dhuhoori, from the United Arab Emirates, residing in Dibba Al Hisn, and working for the Sharjah government. I have my 11-year-old daughter, Ehsan, the fifth of six children. She suffers from Okur-Chung Neurodevelopmental Syndrome (OCNDS). She was born in 2014. We struggled greatly from her birth until she was diagnosed with the syndrome in 2020. To date, only three cases have been diagnosed in the Arab world.
I strive to help parents or guardians of those with the syndrome by spreading knowledge, summarizing my experience with my daughter, and advocating for their cause through governmental and civil society organizations. I am excited to be part of the Parent Advisory Board, helping all families facing this rare diagnosis. Therefore, joining the PAB Foundation means playing a key role in ensuring that everything the foundation offers is available to people living in Arabic-speaking countries and supporting the foundation in raising awareness of OCNDS. I want to direct all the awareness and research we can to the CSNK2A1 Foundation.