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Amanda: The Backbone of Scoliosis Community

“Ubuntu” – I am because you are…

Scoliosis is a lateral curvature of the spine. If left untreated, it can lead to debilitating effects of chronic pain, severe deformity of the spine, breathing problems which may lead to death due to cardiopulmonary and organ failure. Having been diagnosed with scoliosis, Amanda Glenda Bonife-Kiamko joined different scoliosis support groups online in her pursuit of looking for possible treatments for her condition. It surprised her that most information didn’t apply to her and the rest of the Filipinos. If not all, most of them came from patients from other parts of the world. There were limited local resources available. This what made her decide to give a voice to the Filipino community.

She began her advocacy on scoliosis awareness in 2011, when she formed the Help Fight Scoliosis group on Facebook with a friend. She slowly worked her way up to establish Scoliosis Philippines Support Group Inc. (Scoliosis PH) From a small Facebook group, it has reached more than 29k members online. Its awareness page has almost 67k followers.

It is registered as a nonprofit organization with the Securities and Exchange Commission (SEC) and recognized by the Department of Health (DOH) as a member of the Philippine Alliance of Patients’ Organizations (PAPO). With its campaign “Fight Scoliosis” the organization aims to raise awareness and reach out to provide psychosocial support for every Filipino afflicted with scoliosis. In 2018, they championed the signing of the Presidential Proclamation No. 620 declaring JUNE as Scoliosis Awareness Month. They have also been helping patients nationwide through projects, such as awareness activities and lay forum with free screening and consultation, discount on x-rays, and other services in partnership with the Philippine Rehabilitation Institute Foundation (PRIF), Cebu Doctors Hospital (CDH) Group, Davao Doctors Hospital (DDH) in cooperation with the Philippine Physical Therapy Association (PPTA) and various schools with Physical Therapy students.

Amanda defines her leadership with the African word “ubuntu” It’s a Nguni Bantu term that means humanity. In African philosophy, it is “being self through others”. Serving as the lighthouse, she helps and unites different individuals to be part of the advocacy. With her leadership, she has inspired many scoliosis warriors to fight their challenges while volunteering in the community.

She confesses she’s very competitive. As the president of Scoliosis PH, works as Health Protection Advocate with AXA Philippines and manages a family business, she challenges and competes with herself to finish tasks. Being organized is one of her excellent qualities. Doing what she wants and successfully accomplishing her goals satisfies her. However, she also admits that her emotions can sometimes be a hindrance to her leadership. This is due to her passion for her advocacies. When things get stressful, she usually gets “time off” or short breaks to focus on her mental health to gain momentum.

When asked about the most challenging part of being a president of a nonprofit organization, fighting for what Scoliosis PH stands for is her response. She didn’t like the idea of people using the organization for profit – a scenario that can’t be avoided. She is very focused on raising awareness and helping her members. She tries to resolve issues as much as possible to prevent further problems.

Despite her outstanding efforts to establish the organization, Amanda doesn’t want to take all the credit for the organization’s achievements. She is most thankful for everyone who has and currently volunteered in the advocacy, especially to the local chapter leaders. Delegating one for each province and key cities in the Philippines is the strategy that has helped her lead the organization successfully. Although some leadership styles inspire her, she isn’t following any structured one.

Among her inspiration is the Duncan Tree Foundation Founder and President, Ms. Ouida Duncan, who urged her to never to get tired of helping others. According to her, we can always rest, but stopping to be a blessing to someone is never an option.

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Scoliosis Philippines aims to raise awareness and offer a safe space to connect and share experiences related to scoliosis through peer and parent support. 

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