\n<\/p>\n
For the first time in her life, Sutawijaya was surrounded by\u00a0other people with NF, and she was struck by a sense of belonging.<\/span><\/p>\n The experience also shifted her mindset. For a long time, she had asked herself: \u201cWhy me? Out of thousands of people, why am I the only one who got NF?<\/span><\/p>\n \u201cBut a few years back, I started asking, why not me? Everyone runs their own race and we all have our own struggles in this life. Since I\u2019ve been given NF, how can I finish running my race more positively?\u201d she said.<\/span><\/p>\n Sutawijaya said that reframing her mindset spurred her to advocate for others with NF.<\/span><\/p>\n \u201cI know it\u2019s not easy. It feels very isolating. We hope that with NFSS, we can help others on a similar journey find strength and live life fully, even in the face of challenges,\u201d she said.<\/span><\/p>\n NFSS patient volunteers organise quarterly activities\u00a0for members, an annual NF Day and awareness initiatives.<\/span><\/p>\n Given limited resources, getting a\u00a0<\/span>website\u00a0<\/span>and\u00a0<\/span>social media<\/span> channels\u00a0up and running was an \u201cachievement\u201d, said\u00a0Sutawijaya. Information about NF, patient stories and updates on activities are shared through these platforms.<\/span><\/p>\n In time, the society hopes to expand its awareness work into schools and hospitals, and raise funds to help families struggling with follow-up care.<\/span><\/p>\n<\/div>\n