Aili Myasthenia Gravis Care Association is dedicated to caring and helping those that suffer from myasthenia gravis, an autoimmune neuromuscular disease that causes muscle weakness and fatigue.
Early at 5:00 am on December 15, patient volunteers got up from their beds and went to participate in the educational activity held by Aili. TFish helped provided us with a free vehicle and helped us to move our propaganda materials. Photography was provided for free by Song Cheng who comes from the Shenzhen Office of China Public Welfare Photography Association. Everyone was ready for the activity. Myasthenia Gravis is nervous system disease that is clear and reversible. The patients who have recovered from this disorder participated in the activity. They wanted to let people know that the illness is not formidable and our group is hopeful.
At 8:30, the countdown began. Many participants from other NGOs were wearing our T-shirts and were ready to go. The runners would run to raise money for children in disaster areas hit by snow and for patients with myasthenia gravis who are cared for by Aili.
With help from the One Foundation, the propaganda booths of Aili and the Rare Disease Care Center were organized at 9:00. Though simple, Aili won more attention. We used this opportunity to spread knowledge about myasthenia gravis to all the people around us. We gave many explanations to people who knew nothing or had misunderstanding the disease. Nothing can hinder our desire to eliminate misinformation about myasthenia gravis and other rare diseases.
The organizations introduced the difficulties that the patients have to face, hoping to inspire the spirit of mutual help among the people present and hoping to let those suffering from these diseases know that they are not alone. We hope more people will begin to care about those wit rare diseases—transformation comes from understanding.
Despite the rain and wind, our activity was held promptly at 10:30. Cheers could be heard for the runners, who completed the full distance and came back soaked.
Original article written by Ji Liu, translated by Maggie Li, and edited by Yanyan Zhang
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