MLDA hosts charity film screening for rare disease awareness

Rare Disease Day is observed annually on February 28 (or February 29 in leap years) to raise awareness about rare diseases and the challenges faced by patients and their families. Since its inception in 2008, this international movement has played a crucial role in advocating for improved healthcare policies, increased medical research, and greater accessibility to treatment. With over 300 million people worldwide living with a rare disease, the initiative highlights the urgent need for equitable healthcare solutions.

In Malaysia, the Malaysia Lysosomal Diseases Association (MLDA) has been at the forefront of championing awareness of lysosomal storage diseases (LSDs). As a non-profit organization, MLDA is dedicated to educating the public, supporting affected individuals, and advocating for healthcare policies that facilitate better access to treatment. LSDs are a group of approximately 50 genetic disorders caused by enzyme deficiencies within cells, leading to the accumulation of harmful substances. These diseases, which often manifest in childhood, can cause severe health complications and drastically shorten life expectancy.

Film as a Platform for Advocacy

To mark Rare Disease Day 2025, MLDA organized a special charity screening of My Parents’ Midlife Crisis at TGV GSC 1 Utama. The event had a dual purpose: to raise funds for patients with LSDs and to use storytelling as a tool for public engagement. The selected film, which delves into themes of midlife struggles, family relationships, and self-discovery, was an ideal medium to connect with audiences on an emotional level while reinforcing the importance of resilience and support in the face of life’s challenges.

The evening began with the distribution of movie tickets, followed by a press release and a photo session. Members of the media had the opportunity to meet director Joey Lee and the film’s main cast, including Jojo Goh and Douglas Lim. The event also saw the presence of Prof. Ching I-Vern, a geriatrician from Pusat Perubatan Universiti Malaya (PPUM), and his wife, a fellow doctor at PPUM. Their attendance underscored the medical community’s support for rare disease awareness initiatives.

MLDA’s Advocacy Efforts Highlighted

MLDA President Ir. Lee Yee Seng addressed the audience, offering insights into the association’s mission and the challenges faced by individuals with lysosomal storage diseases. He highlighted MLDA’s ongoing efforts in fundraising, public awareness, and policy advocacy to improve healthcare access for those affected by rare diseases. To make the event more personal, he also shared his own experience of a midlife crisis, drawing parallels between the film’s themes and the struggles of rare disease patients and their caregivers.

Following this, My Parents’ Midlife Crisis director Joey Lee, who also served as the film’s producer and scriptwriter, spoke about the power of films in shaping public awareness. She shared behind-the-scenes insights into the making of the movie and how its themes align with the realities faced by individuals navigating life’s challenges. A standout performance in the film came from Douglas Lim, who underwent a significant physical transformation, including weight loss, to authentically portray his character’s journey. His commitment to the role resonated deeply with audiences.

Creating a Lasting Impact Through Storytelling

The screening of My Parents’ Midlife Crisis took the audience on an emotional journey, offering moments of laughter, reflection, and connection. Beyond being an entertaining exploration of midlife dilemmas, the film reinforced the importance of understanding and support in the face of adversity. As the credits rolled, it was evident that the event had left a meaningful impact on attendees.

MLDA’s Rare Disease Day 2025 initiative successfully combined advocacy with storytelling, ensuring that the message of rare disease awareness reached a wider audience in a compelling way. The event underscored how films can be more than just entertainment—they can be catalysts for important conversations and avenues for raising awareness.

As the fight for better treatments and healthcare accessibility continues, initiatives like this serve as a reminder that every voice matters in the journey toward equitable healthcare. By integrating emotional and social narratives into their advocacy efforts, MLDA is helping to create a world where rare disease patients receive the recognition, support, and medical care they deserve.