Local entrepreneur draws on business skills to fight deadly ‘orphan’ disease
Zanne Gray has never been content to sit back and let life happen to her.
A self-described type-A personality, Gray has started several businesses over the years, including BookReview.com and Industry Connection Inc., one of the oldest Web development companies in the state.
So when she became ill 11 years ago with what she thought at the time was multiple sclerosis, the limitations that her condition imposed on her took a big psychological toll.
Housebound for long stretches of time, Gray says that about the only time she’s able to travel outside her home these days is when she goes to the doctor.
“If I’d listened to what the doctors told me and I just went along with it, I would be dead now.” — Zanne Gray
“For a type-A personality and an incredibly social person, that’s horrible,” said Gray. “You know what it’s like to go to the doctor and have it be like a party? That’s what it’s like for me. It’s like, ‘Ooooh, there’s people!’”
But just because Gray has a hard time moving about these days doesn’t mean she’s stopped all forward movement.
In fact, she credits her can-do, businesslike mindset with keeping her alive the past 11 years. About eight months ago, doctors told her she didn’t have multiple sclerosis after all but rather neuromyelitis optica [NMO], an extremely rare and debilitating condition in which the body’s immune system attacks its own cells, particularly in the optic nerves and spinal cord, often leading to temporary blindness, paralysis, and severe pain.
Her diagnosis followed a series of often contentious relationships with seven different doctors, who had mostly stuck with a diagnosis of MS, even though in her gut Gray sensed they were getting it wrong.
“What my symptoms were were not matching what [the MS diagnosis] said,” noted Gray. “And I had one doctor on my four-year anniversary [of my MS diagnosis] tell me that he didn’t think I had MS but that I had NMO, and that I shouldn’t worry about it. And when I looked it up on the Web at that time, people who had NMO had a five-year life expectancy.
“So I spent a good eight months grieving my life and coming to terms with the fact that I was going to die, and I got to a point where I was like, ‘Okay, I’ve lived a pretty fantastic life; I’m proud of what I’ve done and I’m all right.’ And the next time I saw the doctor, he told me I didn’t have NMO. I said, ‘Why are you telling me this?’ and he said, ‘Well, you’re still alive, aren’t you?’ And I was like, ‘Oh, good, another one fired.’”
While it was a relief to finally get a correct diagnosis last year, Gray now faces new hurdles. NMO is considered an “orphan disease,” which means it’s so rare — affecting between 4,000 and 6,000 people in the U.S. — it attracts very little attention or research funding.
That’s where her business friends come in.
Recently, Carol Schroeder of Orange Tree Imports and Laura Zirngible of Jolly Giants LLC organized an online fundraiser for Gray through GiveForward, a crowdfunding site that’s raised more than $150 million for various causes.
So far the campaign has raised more than $2,700, a portion of which Gray is using to attend this week’s 6th NMO Patient Day in Los Angeles.
For Gray, just being able to attend the conference has been a huge step forward in battling the disease.
“First of all, to meet other people who have NMO, that’s really important to me,” said Gray. “I am really hoping to find out that I’m not the oldest surviving NMO person, because as far as I’ve found on the Web, I am. I want to meet someone who’s had it for 12 years. I also get to meet with the best doctors and scientists around the world who are doing nothing but studying this rare disease.”
A debt of gratitude
For Schroeder, helping Gray through her struggles with NMO is a way to pay back a member of the business community who has given freely of her time and resources for many years.
Schroeder notes that Gray has mentored numerous businesswomen during her career. Years ago, Gray started an apprenticeship program for women when Web development classes were still few and far between. As part of their apprenticeships, the participants were required to build websites for nonprofit organizations, and as a result of that program, close to 100 websites were created for various groups.
Schroeder first met Gray back in 1997 after Orange Tree Imports got a call from a Public Television show called Small Business 2000, which wanted to feature the store.
“At that point, the Internet was somewhat new, and they said, ‘Oh, by the way, by the time it airs, you better have a website,” said Schroeder.
That led Schroeder to Industry Connection and Zanne Gray.
“She launched our website and did a great job, and she gave us a great deal on it and had some really creative ideas,” said Schroeder.
While dealing with NMO has made it difficult for Gray to keep up with the demands of running a business, she’s kept Industry Connection and BookReview.com going, in the meantime impressing some of her fans and fellow business owners.
“I’m amazed that she’s still going,” said Schroeder. “I think she has a lot of determination, and I really admire that, because it would have been really easy for her to say, ‘I’m just going to take Social Security and not engage with the world.’”
Through the online fundraiser, Schroeder and Zirngible are hoping to raise at least $25,000 to help Gray buy a wheelchair-accessible van that would allow her to take a more active role in the community.
Gray is also encouraged by the work of the Guthy-Jackson Charitable Foundation, which was founded by Guthy-Renker co-founder Bill Guthy and his wife, Victoria Jackson, shortly after the couple’s daughter was diagnosed with NMO in 2008. Since its founding, the organization has raised $35 million to support scientific and clinical research into this orphan disease.
Through it all, though, Gray has been her own greatest source of strength and courage — and she’s used the perseverance and business skills she honed over the past 20-plus years to survive.
“It’s the only reason I’m still alive, because I had to advocate for myself,” said Gray. “If I’d listened to what the doctors told me and I just went along with it, I would be dead now.”
And with a little help from her friends, she plans on fighting the good fight for many more years.
“I am not a quitter. I am not giving up.”
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