Diagnosed with ALS, award-winning news presenter Riz Sunawan co-founded the first Motor Neurone Disease Association of Singapore

June 21 marks the MND/ALS global awareness day every year.
by Alia Fatin Binte Abdullah 2022-06-21 • 6 min read
Alia Abdullah is a law graduate and digital media specialist. In 2021, she won the Exemplary Skillsfuture @ Public Service Award, a national award that recognises individuals who constantly upgrade their competencies. Alia is an exceptional writer whose work has been featured in Young Women in Leadership Dialogue's (YWILD) Commemorative Book "Unprecedented - To the Beat of Her Own Drum” and on platforms such as Mvslim and The Muslim Vibe. Alia lived and worked in Saudi Arabia for 2 years. She is now based in Singapore.
2022-06-21 • 6 min read

In October 2018, award-winning news presenter, journalist, voice talent and host, Asri Sunawan, 43, better known as Riz Sunawan, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), the most common type of Motor Neurone Disease (MND).

ALS, a progressive nervous system disease, affects nerve cells in the brain and spinal cord, causing loss of muscle control. A person with this disease will have difficulty moving, speaking and eventually, breathing.

“The challenges I face vary at the different stages of my illness. From being able to walk to using crutches and then depending on a wheelchair.” 

“I am fortunate to have a strong support system, from my family, friends to even colleagues when I was still able to work. I also have a strong medical team supporting me - doctors, therapists, etc.”

Understandably, the notion of having his lifespan shortened was difficult for Riz to accept.

“Faith plays a huge part in making me calm, preventing me from falling into a dark place and accepting what was planned for me. Once you’ve overcome acceptance, everything else will fall into place. Alhamdulillah.”

He became one of the founding members and ambassador for the very first MND Association of Singapore, established by patients and volunteers in April 2021. The association’s vision is for every MND patient and caregiver to live their lives with dignity, care and hope.

“In whatever time that I have left, I want to create more awareness about the terminal disease and advocate for the disabled. I know what it’s like having gone through various stages of being disabled, from using crutches, and then a wheelchair to now being totally bedridden.”

Riz acknowledges that we have come quite far in terms of providing accessibility, especially in our transportation system. However, he feels that “there is still room for improvement in areas like digitalisation, for example." He feels that "more can be done to include the various needs of the disabled.”

Riz Sunawan MND

When asked who inspires him, Riz highlights the “ALS/MND Warriors” who came before him, who are “still living and fighting the illness”. He mentions his two friends who are born with disabilities - Ms. Suhana Suhaimi, who has cerebral palsy and Mr. Zahid Yassin, who has spina bifida and is wheelchair-bound. 

Mr. Zahid Yassin (left), Ms. Suhana (right) and Mr. Riz (not in the picture) spent time distributing 300 bottles of Hari Raya cookies to Muhammadiyah Welfare Home representatives

“Their resilience and tenacity amaze me every single day”.  

He is also immensely grateful for his father, Hj Sunawan Dasuri. “Being a caregiver is tough. At the age of 72, he still manages the household without any complaints. He takes care of my needs, as someone who is bedridden, and the needs of mum, who suffers from kidney disease and has to undergo peritoneal dialysis (PD) treatment every day.”

Knowing that the average life expectancy after diagnosis is two to five years, Riz is determined to contribute in whatever ways he can. He still sits on the Malay Language Council of Singapore Committee and Bulan Bahasa Committee. 

Riz says that one good thing that came out of this journey is that his stories have “impacted and inspired strangers to live life to the fullest in the face of adversity.”

He wants to inspire others to never give up and actively gives words of encouragement and motivation on his Instagram page

“I want to show others that you can still do so many wonderful things, despite your disability and limitations. If Riz can do it, you can too. Do not give up and never lose hope. Don’t let your physical limitations stop you from contributing back to society.”

This interview has been edited for length and clarity.

Read more inspiring stories here.

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