PatientsForce and the Taiwan Foundation for Rare Disorders host a 'Smile Ambassador' craft workshop — bringing understanding into everyday life through companionship and co-creation
AI-translated from the Chinese original · editorially reviewed
To deepen employees' understanding of families living with rare diseases and put corporate social responsibility into practice, PatientsForce and the Taiwan Foundation for Rare Disorders recently co-hosted a "Smile Ambassador" hands-on craft workshop, inviting Chia-Chen, a family member of a patient, to lead Media-WIND Health Group (MWHG) colleagues through a warm and meaningful crafting session. The atmosphere was heartwarming as handmade creations wove together understanding, companionship, and support.
"Crafting began with love; I keep crafting because I love it." Chia-Chen shared that her crafting journey began with her elder daughter, who lives with Alstrom syndrome, a rare disease. Caring for her child over the years, Chia-Chen volunteered at school. One day, her elder daughter admired her younger sister's beautiful hair accessories, but chemotherapy had left her with no hair to tie. That moment gave Chia-Chen a simple yet profound wish — that once treatment ended, her daughter could wear a hair accessory made by her mother's own hands. She began attending craft classes for volunteer mothers, and unexpectedly opened a healing journey of her own.
As her skills deepened, crafting became not only an important way for Chia-Chen to relieve stress but gradually a medium for mother and daughter to grow together. Her elder daughter, whose condition is accompanied by visual and hearing impairment, currently attends the Taipei School for the Visually Impaired. To give her more social experience and interaction as she entered vocational high school, Chia-Chen began taking her to run market stalls, training her communication, independence, and confidence through real contact with people. Along the way, mother and daughter became partners, slowly discovering what the child can do, wants to do, and is able to do.
At this event, Chia-Chen drew on years of hands-on experience to design a range of simple, everyday craft activities — essential-oil amulets, keychains, hair accessories, and badge holders — letting participating colleagues experience the focus and healing that crafting brings while getting closer to the real daily lives of families affected by rare diseases. The "Smile Ambassador" event was more than a craft workshop; it was a lesson in deep dialogue and empathy. Going forward, we will continue to partner with charitable organizations so that caring goes beyond slogans and truly reaches hearts and everyday life.
Companies are welcome to invite a rare-disease Smile Ambassador to co-host a corporate ESG talk.
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Alstrom syndrome is an extremely rare genetic disorder that, as it progresses, may affect vision, hearing, and cardiac, renal, and metabolic function. Clinical presentation varies widely between patients, and the caregiving challenges are long-term and complex — all the more reason these families need society's understanding and support.