A Daughter's Cure is Priceless

A mother spends millions to fund research for neuromyelitis optica, which can leave patients paralyzed or blind

By Sandy Banks
November 28, 2009

Victoria Jackson doesn't need this weekend's retail sales to satisfy her shopping list. She can afford to spend, with her lucrative cosmetics business and a husband with a billion-dollar infomercial marketing firm.

They've already put $15 million toward their most important holiday gift, one that can't be wrapped or put under a Christmas tree, because it's not something from the mall or a boutique.

It's the quest for a clean bill of health for their 16-year-old daughter, who suffers from a rare, debilitating disease that has been -- until now -- virtually unknown and ignored by the medical community.

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It's easy to begrudge the fortunes of the rich. I admit to a moment of eye-rolling when I first heard of this millionaire mom trying to buy her daughter's way out of an incurable disease.

Then I thought of all the nights I spent hovering over my ailing kids, worrying about headaches and stomach pains that turned out to be garden-variety illnesses. I imagined listening to a doctor tell me that one of those aches might mean my daughter would lose her ability to walk or see.

That's what happened to Jackson last year, when a pain in her daughter's eye landed them in a neurologist's office. The symptoms -- eye pain, fading colors, loss of vision in one eye -- were diagnosed as neuromyelitis optica, a disorder known as NMO that would have terrified Jackson if she had known then what it is.

"I was in 'mom denial,' " she told me. "I didn't have any idea of the seriousness of the world I was entering . . . until I heard that in four years, my daughter could be blind or paralyzed. That we could lose her."

Jackson went from denial into overdrive.

"We spent spring break at the Mayo Clinic," she said, seeking advice from one of the few physicians who has extensively studied the disorder. She told that doctor, "You're doing research. I've got a checkbook. You and I are going to get to know each other."

Jackson is blunt and unaccustomed to failure. Sometimes it takes a desperate parent with deep pockets to bypass convention and jump-start medical advances.

Like the mother in Minnesota who sank six years of profits from her successful tech firms into finding new ways to treat autism. She's convinced that the nonprofit Hyperbaric Treatment Center she funded has improved life for her autistic son and his classmates.

And the Nevada couple whose $5 million launched a research institute that helped document a viral link to chronic fatigue syndrome, a disorder that mystified doctors and afflicted their daughter.

Jackson and her husband, Bill Guthy, founded the Guthy-Jackson Charitable Foundation last year to fund research into NMO, which had been considered a strain of the autoimmune disorder multiple sclerosis, but is now known to require different treatment and have a different prognosis.

The disease tends to strike suddenly, progress quickly, and follow an unpredictable path of remission and relapse. NMO is so rare -- with fewer than 4,000 patients, compared with 400,000 with multiple sclerosis -- that drug companies have no financial incentive to study treatments.

In the past, it often took years to diagnose it, leaving patients with irreversible damage to their spinal cords and optic nerves.

Candace Coffee of Bakersfield woke up one morning six years ago with flu-like symptoms and blurred vision. Within a matter of hours, her vision was gone. "It was like a black curtain going down," she recalled.

Steroids restored her sight temporarily, but months later, "my right eye started to go . . . and my skin felt like it was being ripped off," she told me. Before long, the professional dancer "was stumbling around and blind."

Now, she's learned to recognize the symptoms and seek immediate treatment. She is blind in one eye, but is dancing again. "But if I'd known what it was, I might have been able to save my sight," she said. "That's why getting the word out is so important."

I met Coffee at a conference Jackson sponsored this month in Beverly Hills. She picked up the tab for scientists flown in from around the world, and dozens of patients from around the country. It was the first time many of them had met anyone else with their disease.
"Can you imagine, in this day when everybody's got a support group, for these people to feel so alone? I wanted them to be able to sit down together, talk to one another," Jackson said.

That alone, she said, was worth the money.

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NMO is just a tiny blip in the medical cosmos. In this world, where medical choices turn on dollars and cents -- from mammograms for 40-year-olds to end-of-life care for octogenarians -- how wise is it, I couldn't help but wonder, to sink so many millions into something that might help so few?

Then I met Winona Davis, a single mother in Rialto raising two daughters with NMO.

The oldest, now 20, got her first symptoms at 9. She spent her 10th birthday hospitalized; doctors couldn't figure out why she couldn't see. Since then, she has battled paralysis and blindness off and on, traumatized not just by the severity of her symptoms, but by their unpredictability.

Until her family attended Jackson's conference, "we felt like we were aliens," Davis said.

She's hoping that the foundation's work will lead to medical advances to help her daughters. But it's already been a gift, she said, to other families in their small world.

"The other mothers, now they have a chance to know, to tell someone why their kids can't ride a bike. So they can have friends. So the other kids aren't laughing at her when her legs give out, or she wets herself in school."

"Victoria knows," Davis said, how frightening it is, how helpless the disease can make a mother feel. "You don't sleep, you can't think. . . . You can't even tell your child what's wrong. All you can do is try and comfort them."

Unless you're a mother with millions to give.

sandy.banks@latimes.com

Information about NMO is available at http://www.spectrum.guthyjacksonfoundation.org/ They've already put $15 million toward their most important holiday gift . . . It's the quest for a clean bill of health for their 16-year-old daughter.

Mayo Clinic Neurologist Reports: “Thousands of NMO Patients are Misdiagnosed with Multiple Sclerosis”

Groundbreaking Conference for Rare Neurological Disease – Neuromyelitis Optica (NMO) – Brings Together World’s Top Doctors, Medical Researchers and Patients in Pursuit of a Cure

Los Angeles (Nov. 11, 2009) — Thousands of Neuromyelitis Optica (NMO) patients are potentially being misdiagnosed with Multiple Sclerosis (MS), according to Mayo Clinic Neurologist Sean Pittock, M.D., largely due to lack of awareness of NMO within the medical community. Dr. Pittock shared this finding with more than 50 of the world’s leading doctors and medical researchers – from Harvard to Oxford – who gathered at the 2009 NMO Roundtable Conference, sponsored by the Guthy-Jackson Charitable Foundation.

NMO is a rare and debilitating disease that attacks the optic nerves and spinal cord, often causing vision loss, paralysis of legs and arms, and sensory disturbances. The Guthy-Jackson Charitable Foundation has brought together these researchers to help find a cure for this rare disease.

Dr. Pittock came to his conclusion based on ongoing research at the Mayo Clinic. Of the 1,200 blood samples that are sent to Mayo Clinic’s neuroimmunology laboratory for NMO antibody (NMO-IgG) testing each month, approximately 70 new patients test positive for NMO, which is surprisingly high considering it is believed to be a rare disease. Of the 70 patients who have the NMO antibody, Dr. Pittock has found that a majority were previously thought to have MS.

Making the distinction between MS and NMO has been greatly assisted by Mayo Clinic’s recent discovery of this NMO antibody. In fact, this is the first biomarker that has shown to be sensitive and specific for any central nervous system (CNS), inflammatory demyelinating disease.

“It’s important to differentiate NMO from MS as these disorders are treated differently,” says Dr. Pittock. “The identification of this novel antibody marker will hopefully assist neurologists in making a correct diagnosis of NMO, rather than MS.”

Dr. Pittock believes that part of the reason for the lack of awareness of NMO is that there was no biomarker until recently, and traditionally, NMO was considered by many in the medical and research communities to be a form of MS, a difficult disease to diagnose. Recent clinical and pathological studies now support the concept that NMO is a distinct disease from MS.

“It’s important for the neurologists to be aware that NMO is associated with symptoms other than optic neuritis and transverse myelitis. NMO patients can have intractable hiccups, nausea, vomiting as well as problems with thermoregulation,” says Bruce Cree, M.D., Ph.D., M.C.R. of the University of California San Francisco Multiple Sclerosis Center. “It is important to test for presence of the anti-aquaporin 4 antibody, in the setting of neurological illness presenting with these symptoms as well as optic neuritis and myelitis, even in patients who have abnormal brain MRI findings. Some of these abnormalities can appear to be identical to those seen in MS, whereas others are more distinct of NMO.”

At the conference, Mayo Clinic Neurologist Dean Wingerchuk, M.D., also reported that the prevalence and incidence of NMO have not been firmly established. Based on current data, in aggregate, it suggests that there are likely more than 4,000 people with NMO in the United States.

That is why the Guthy-Jackson Charitable Foundation is launching a significant medical education campaign to ensure that doctors nationwide are aware of the differences between MS and NMO. Doing so will help patients get the appropriate treatments and will help more researchers collect the best data in their pursuit of a cure.

Cosmetics trailblazer Victoria Jackson established the foundation in July 2008, one month after her daughter’s diagnosis.  The foundation’s approach is to provide bureaucracy-free funding to researchers willing to share data to help find a cure.

“I am on this mission for my daughter, and for the thousands of other families who have seen their world turned upside down by NMO,” says Jackson. “Through our work at the foundation, more and more, we are hearing from NMO patients who have been previously diagnosed with MS.”

While the first two days of the conference focused on research, the third day will take an emotional turn. Today, the conference, for the first time, will host a patient session dedicated to those affected by NMO, enabling them to engage in a dialogue with the medical community and to share personal stories with others affected by the same disease.  Most of the patients will be meeting other people diagnosed with NMO for the first time.

Patients who attend the conference also will be enrolled in the newly-established Guthy-Jackson Repository for NMO to collect much-needed blood samples.  This innovative repository is critical to future research.

“For me, this has been a very lonely journey. NMO needed a voice and a face to make it real for the rest of the world.  It has that now,” says Candace Coffee, a young woman who was diagnosed more than six years ago. “Those of us struggling everyday with NMO, feeling the weight of its effect on our lives, finally have an advocate.”

 About The Guthy-Jackson Charitable Foundation

Cosmetics Pioneer Victoria Jackson: Mom on a Mission Adopts “Orphan Disease”

Founder of Guthy-Jackson Charitable Foundation leading quest to find cure for daughter, thousands of Americans suffering from disease unknown by most in medical establishment; bringing together world’s top doctors, medical researchers to share medical findings at 2009 Neuromyelitis Optica (NMO) Roundtable Conference, Nov. 9 – 11 in Los Angeles

 Los Angeles (Nov. 9, 2009) — Without the usual search lights, red carpets and celebrities that mark so many premieres in Hollywood, a unique gathering is taking place this week with a human drama quietly playing out, more real and compelling than anything on the movie screen.

During the 2009 Neuromyelitis Optica (NMO) Roundtable Conference , Nov. 9 – 11 at the Tower Beverly Hills Hotel in Los Angeles, the world’s top doctors, medical researchers and patients are coming together in a collective pursuit for a cure for Neuromyelitis Optica (NMO) Spectrum Disease.  NMO, a rare and debilitating disease — a so-called “orphan disease” — is often misdiagnosed as Multiple Sclerosis (MS).  NMO attacks the optic nerves and spinal cord, often causing vision loss, paralysis of legs and arms, and sensory disturbances.  It is also known as Devic’s Disease.

More than 50 doctors and medical researchers, who arrived from around the world, are presenting and sharing the latest scientific research conducted over the past year.  They represent the top medical research institutions, including The Mayo Clinic; Stanford University, University of California, San Francisco; Johns Hopkins University and The Scripps Research Institute.

For the first time, the conference will host a patient session on Nov. 11 for those who have been diagnosed with NMO.  Patients who attend the conference will be enrolled in the newly-established Guthy-Jackson Repository for NMO to collect much-needed blood samples for continued research.  This new initiative, set up with the Accelerated Cure Project (ACP) and the University of Texas Southwestern, allows people with NMO to enroll into the repository at collection sites located in leading neurology clinics across the country.

Among the attendees is Victoria Jackson, who established the conference and founded the Guthy-Jackson Charitable Foundation.   Jackson, a prominent Los Angeles entrepreneur and philanthropist who founded Victoria Jackson Cosmetics, is a self-described Mom on a Mission who is responsible for bringing the doctors and patients together this week. 

“Look, I’m a mom.  When my daughter was diagnosed with NMO, I did what any mom would do.  After the tears, I went into battle mode.  But unlike most moms out there, I had the resources to build an army, and create the Guthy-Jackson Charitable Foundation,” says Jackson.

“I am on a mission.  I will save my daughter.  But it’s become much bigger than that.  Through the Foundation, I’ve adopted a lot of orphans.  I have a whole new family—dads and daughters, moms and sons.  That was something I could never have imagined and it has filled my heart,” Jackson adds. “There’s really no such thing as an ‘orphan disease’—if we find a cure for NMO, the chances increase that diseases such as MS will benefit. It’s about curing and caring. We’re all in this together.”

The patient session will enable patients to engage with top physicians and to share personal stories with others affected by the same disease.  Assisted by the Foundation, the patients have come from across the United States, from Alaska and Maryland to Florida and here locally in California.

 “Their decision to attend is an act of courage on a scale that most of us will never have to face,” says Jackson. “And that is why, for each and all of them, a cure must be found.”

Jackson established the Guthy-Jackson Charitable Foundation in July 2008, one month after her daughter’s diagnosis.  After realizing there was little information, funding or research, she and her family knew they were working against the clock and took action.  They quickly set up the foundation.  Now, it is leading the effort to bring resources to a disease that has been ignored by, and in most cases, unknown within the medical community.

  The foundation’s mission is to raise awareness about NMO among doctors, diagnosed and undiagnosed patients, researchers and policymakers.   It is committed to being the home for NMO where patients and their families, the public and the medical community can find and share life-saving information and the latest medical research.

 The foundation’s accomplishments to date are remarkable.  In less than 18 months, it has established an annual medical conference dedicated to NMO, created the NMO Repository, and initiated and funded eight top research projects around the United States.  More research projects are being considered and activated on a regular basis. 

 About The Guthy-Jackson Charitable Foundation

A year ago, my 16 year-old daughter was diagnosed with a rare disease called Neuromyelitis Optica (NMO). NMO is what they call an “orphan disease”—meaning, not enough people have it to justify the time, money and energy required to affect a cure. Last year, my husband Bill and I created a Foundation to give grants to doctors and researchers—and bring those “orphans” together.

I knew it would be tough to get the world to care about an illness that so few of us have. Most people are too kind to say that in so many words, but I’d like to tell you why NMO matters.

That’s the question I always want to be asked first. Because it would probably be the question I’d ask. I’ll answer with another question: What are the requirements of compassion? In the Not-So-Golden Age of reality shows and the 24-hour news cycle, what does it take to get our attention? A police chase? Genocide? Celebrity scandal? I think what it comes down to is the quality of the attention we choose to give; that defines our humanity, our “tribe.” Look, I’m a mom. When my daughter was diagnosed with NMO, I did what any mom would do: after the tears, I went into battle mode. But unlike most moms out there, I had the resources to build an army, and create a Foundation.

If you asked, Would curing NMO help unlock the cure for other diseases, like MS? Probably. But let’s take NMO and MS out of it—and ask the question again. Why should we care? The answer simply is, “Because caring is the best part of us.” Don’t get me wrong, I’m on a mission. I will save my daughter. But it’s become much bigger than that. Through The Guthy-Jackson Foundation, I’ve adopted a lot of orphans. I have a whole new family—dads and daughters, moms and sons. That was something I could never have imagined, and it has filled my heart. So: Why should we care? Because caring fills the heart and soul, and is the very best part of who we are—and who we can be.

—Victoria Jackson