Christine Ha, the vision-impaired cook best known for triumphing over a slew of sighted rivals to win the reality TV competition MasterChef, is lending her celebrity to an awareness campaign about the rare disease that led to her blindness.

The effort, which kicks off today, is funded by Horizon Therapeutics, marketer of a drug that treats the condition, called neuromyelitis optica spectrum disorder. Also known as NMOSD, the rare, inflammatory disease attacks the optic nerves, eventually leading to vision loss. About 10,000 to 15,000 people are affected in the U.S.

“NMOSD Won’t Stop Me” aims to bring the community together through storytelling during March’s NMO Awareness Month and beyond, the drugmaker said. People living with NMOSD and caregivers are encouraged to share their stories at the campaign’s microsite.

Ha’s own story underscores the danger of delayed diagnosis, so common among those in the rare illness community. She was 19 when she experienced her first NMOSD-related symptom, but it took four years for her to get to the bottom of it through a biomarker test.

“Those four years were tough because I was put on treatment that didn’t work for me,” Ha recalled. “They ran all sorts of tests and even ended up diagnosing me, by default, with multiple sclerosis.” 

With nothing to stave off the neuritis wreaking havoc with her optic nerves, Ha endured “year after year of attack after attack,” causing the nerves to atrophy over time. NMOSD-related inflammation also hit her spinal cord. While she was able to make a recovery from the associated paralysis and motor-sensory issues, Ha’s sight gradually deteriorated throughout her 20s, with nearly all of it gone by age 28.

Ha said she wants others living with NMOSD to know there’s “a bigger picture” and not to allow themselves to be defined solely by the disease.

“Pursue hobbies, interests, a vocation,” she urged. “I try to live by example and lead in all these ways.”

Indeed, about a decade ago, she got a call from the producers of MasterChef, who had seen Ha’s now-defunct The Blind Cook blog. The producer invited her to audition, as Ha recounted this week on the podcast A Slight Change of Plans. After impressing at an open casting call, she was accepted as a contestant and went on to win the third season of the Gordon Ramsay-hosted show in 2012. 

Since then, Ha, who is Vietnamese-American, has opened two Vietnamese restaurants in her native Houston, The Blind Goat and Xin Chao. She also wrote a New York Times best-selling cookbook and hosted a cooking show for the visually impaired. Her Instagram page, @theblindcook, chronicles her many pursuits.

To drive people to visit the NMO campaign’s microsite, Ha is doing a satellite media tour. Those who share stories can win a copy of her cookbook, Recipes from My Home Kitchen, as well as a chance to take part in an interactive, small-group virtual cooking class with the master chef herself.

The campaign comes on the heels of Horizon Therapeutics’ acquisition of Viela Bio for $3.1 billion last year, which added the drug Uplizna to the company’s product line. Uplizna was approved by the FDA in June 2020 for the treatment of adults with NMOSD.

According to a report from the advocacy group Global Genes, rare disease transactions accounted for 29% of all biopharma therapeutic M&A deals last year. 

Ha’s celebrity disease ambassadorship is yet another outgrowth of the patient-led revolution in rare disease therapeutics. In addition to lending their influence for social media marketing efforts, patients are also pushing for the formation of companies and developing essential drugs. 

Ha noted that, before her celebrity turn, she wasn’t so outgoing. 

“Dealing with the vision loss and diagnosis process back in my 20s was very tough and there were moments when I felt depressed, sad and upset. I was wondering why this was happening to me,” she said. “I don’t want people to feel inadequate when going through that phase of their life and think as if I’ve always been this way.”

Each patient experiences that long, arduous path of symptoms, diagnosis and treatment in different ways, Ha added. “And that’s OK. I’m just one example of how, through coping and adapting to NMOSD and vision loss, it’s possible to still achieve goals in life, and then some.”

Ha urged patients to surround themselves with a positive support network, whether it be coworkers, family or friends, their healthcare team or others in the NMOSD community. 

“It’s important to connect with each other and share stories with other patients, because that empowers us to be more educated and to become advocates of our own health,” she said. “Once you get your health under control and stable, that’s when you can achieve other goals.”