Pakistani Friedreich’s Ataxia Patient Forms Nonprofit to Raise Local Awareness of FA
Haji Babar Naseer Sheikh was diagnosed with Friedreich’s ataxia (FA) soon after earning his bachelor’s degree. His worsening neurological symptoms and muscular dystrophy left the young Pakistani man unable to speak and move.
But Babar couldn’t find the support he needed in his own country, so he decided to start a non-governmental organization (NGO). The Bin Adam Foundation is committed to help other patients by spreading awareness of FA.
“I consulted almost all neurology specialists in the country but they were unable to diagnose my condition,” Babar told The News, a Pakistani publication, adding that he was initially unaware of the disease. “Then doctors told me that I was suffering from Friedreich’s ataxia, for which there is no treatment yet in the world. I started gathering knowledge and information about the disease.”
Since then, Babar has registered 90 patients throughout Pakistan. He has asked the government and philanthropists to support his NGO, and hopes other patients come forward and help him spread awareness about FA.
“I do not need any money for my treatment as there is no cure for the disease,” he said. “All I need is some financial support to be able to print pamphlets and other material for running a public awareness campaign. I am also in touch with other patients of the disease in the U.K., India and several other countries.”
Babar said that even though some doctors in the United States were conducting research on him, he couldn’t proceed due to lack of funds. “Unfortunately, we don’t have any ataxia specialist here in Pakistan, but should any doctor wish to conduct research on the disease, I am ready to extend all possible support,” he added.
The Bin Adam Foundation currently runs several projects. These include efforts to establish a genetics lab for all types of diagnosis, especially FA; the Bin Adam Special Education (BASE) initiative for special children, and a computer academy for women.