- Guest Blogger: In the last few days of December 2015, my son Andrew had the opportunity to meet with the charismatic Kelly Ma of Taiwan. I asked Andrew to be the guest blogger for this blog.
Kelly Ma, or KAI-NI, Ma (馬凱妮) as she is called in Taiwan, is a beautiful, energetic, devoted mom and student pursuing post-graduate study in Public Policy, and is living with GNE myopathy. Kelly Ma has been nominated by the Social Welfare Party as a Parliamentary candidate. Kelly Ma has been tirelessly campaigning for the past three months to educate and spread awareness of what it is like to live with a disability. Her focus is on social welfare for the disadvantaged, disabled, and elderly people in Taiwan.Not only is Kelly Ma afflicted with this debilitating muscle disease, she has two older sisters who are likewise affected, Jing Ying Ma (馬晶瀅) and Joy Ma (馬景英). As far as she knows, no one else in her family's history has shown signs and symptoms of GNE myopathy. She is well aware of the progression of this disease as she has seen her eldest sister getting so much weaker that she now needs a full-time caregiver.During my visit Kelly guided me through her beautiful city of Kaohsiung on the West Coast of Taiwan, where she is currently running for public office under the Social Welfare Policy. Awareness and public policy relating to disability is very minimal in Taiwan, and in between raising her two sons, Kelly Ma works tirelessly to promote awareness and support the growth of policy reform for individuals with disabilities. Kelly is still walking makes a daily effort to visit many places within her city to build a strong community, and campaigns on behalf of those individuals without representation within Taiwan.During the last three months, Kelly Ma has eagerly taken to the streets to ask for voting support in the coming Parliamentary Election on Jan. 16. Kelly hopes that through her campaign and her promotion of public policy, future generations living with disabilities will have an easier time in life as active members of the community.Kelly Ma discussed with me her plans to set up a Taiwanese branch of GNE-myopathy International. She plans to set this up in order to find more GNE myopathy patients in China and Taiwan. She is not aware of any other patients with GNE myopathy in her country besides her two sisters..- Kelly Ma also states that disabled people in Taiwan undergo hardship in every aspect of life. And so, the disabled should enjoy at least the same basic human rights as anyone else. If elected, Kelly would call for the central government to reform and strengthen their social welfare policies for all disadvantaged persons, especially for patients with rare disorders.
PLEASE VOTE FOR KELLY MA if you live in Taiwan, as her capability will be beyond any job description any other candidate could offer. She has devoted herself to helping the elderly, disabled, and those with rare diseases.- Links with news on Kelly Ma
Note: Guest Blogger Andrew Ananda is an installation artist who is very informed about GNE myopathy as he has many family members who suffer from GNE myopathy.
