This May, an award-winning soprano will sing to support chronic neuro-immune disease awareness. On Saturday, May 13th, 25-year-old Jacqueline Ko will present the gala benefit concert Here I Stand at Marpole United Church. The show honours the May 12th International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/CFS & FM), and a portion of every ticket sale supports the ME/FM Society of BC.
Ko has suffered from ME/CFS since age six and she wants to use her passion for music to raise awareness for the disease, which affects around 28 million people worldwide. “ME can change the course of your life forever – it certainly did for me,” Ko says. “I’ve seen studies that compare its impact to multiple sclerosis, late-stage cancer or congestive heart failure, but it’s still rare for this disease to be taught in medical school. They say as many as 9 out of 10 people aren’t even diagnosed. I was lucky in that regard – but the fact is, even with a diagnosis, they still don’t fully understand the cause or have a cure.”
Despite the challenges of her illness, which left her bedbound for years, Ko has managed to become a celebrated singer and show producer – a story told in the new book Lighting Up a Hidden World: CFS and ME by Valerie Free. At age 20 she co-founded the critically acclaimed production company Opera Mariposa, and over the last four years she has used her platform to advocate for others, with the organization’s annual benefit shows raising over $35,000 for ME/CFS & FM to date. “I wrote Here I Stand to not only raise awareness but support bigger changes,” says Ko. “For a lot of people with ME or Fibromyalgia” – the latter a related but distinct illness – “symptoms are only half the struggle. The other half is dealing with pervasive public misconceptions and a lack of medical support.”
Still, Jacqueline is hopeful. “Organizations like the ME/FM Society of BC do amazing work, and I think things are shifting. There have been global protests and coverage in outlets like the New York Times, plus the new ME documentary Unrest is premiering in Vancouver this May. It seems like people are waking up to the widespread impact of this disease. Now we need research funding and public health policy to catch up, and I want to do what I can to help make that happen.”
In Here I Stand, Ko tells her personal story through music, weaving together everything from pop to opera to Broadway in a show that has something for everyone. Highlights include pieces by Puccini, Verdi, Stephen Sondheim and Andrew Lloyd Webber, as well as songs from the hit musical Hamilton. Ko will be joined onstage by pianist Angus Kellett and several guest artists, and the evening will include a reception as well as a charity raffle contest with over $2,000 in prizes.
You can get tickets to the concert here.