“What I’d like to see is a future where if you break your neck or your back, you’re treated for a few weeks and then you’re back to work. Just like if you had broken an arm or a leg.” ~ Noela Vallis ~
|Logo of the Spinal Cord Society New Zealand|
I can’t get Noela Vallis out of my mind, and I think she challenged me to think about ways to achieve a cure that I had never thought of before.
What do you do if you are trying to do something that has never been done before and you’re not willing to go beg the government to do something you know that they won’t fund anyways? I’ll tell you what Noela Vallis did, but before I do, let me say just a few words about trying to deal with other people working on a ‘cure’.
I’ve sent out a lot of emails to different researchers and organizations dealing with, or supposedly dealing with, curing spinal cord injuries, and with the exception of a few (which you'll also be introduced to in the near future), I never hear back.
So I was so shocked when I sent an email off to the Spinal Cord Society of New Zealand asking to interview their Chair, Noela Vallis and got a response within two hours saying that my email had been forwarded to her. I was even more surprised when I got an email back from her telling me that she’d love to talk. “Give me your number,” she said. I knew that I had met a very different person.
Now before I go on, let me tell you who she is. She is a seventy year old woman (told me this right off the bat) who set up an organization twenty five years ago to beat paralysis after her husband was paralyzed in a jet boat race accident. Her organization has just won approval for clinical trials in New Zealand using OE cells (OEC = Olfactory Ensheathing Cells also known as OEG cells = Olfactory Ensheathing Glia) which are harvested from a patient’s nose and implanted into the damaged spinal cord to cure spinal cord injury.
You can find more about their trials by visiting their website or watching an interview with all the important players.
“If they could put a man on the moon,” she started, and I knew I had found someone who I would enjoy talking to for an hour. I wish I could have talked to her for ten hours because it would have been ten hours of laughter and learning.
And with her ‘man on the moon’ theory she started fighting for a cure when no one believed it was even possible and, “the last five or six years have shown that it is clearly possible to cure SCI.”
How did she do it? Along with travelling around the country speaking to different groups, she says, “I work four or five hours a day and then I just sit in my kitchen from 7 to 11PM and raise the money and talk to people.” Even though she’s very modest about it all, you know that she is the one who has made this all possible and without one cent from government. “If I had tried to do it through the government, there would have been too much red tape.”
For the first ten years she raised money and sent it on to research being done in America, and then one day she was told that even if a cure was found in America, “you can’t all come over here to get cured.” So she went outside, kicked the car, and said, “what in the hell am I going to do?”
And then in a very practical way that suits her personality, she went about organizing a cure in New Zealand.
She needed a researcher, so she found one, raised the $290,000, and shipped her off to Alabama in July 1999 for two years to learn about a cure for spinal cord injury. When the researcher came back, Ms Vallis realized that there was no sense having a researcher but no place to do the research, so she built a research laboratory. Started building it in February 2002 and moved in May 2003. Cost her $128,000 dollars and then she raised another $1.5 million to equip it.
She makes it sound so easy, and listening to her, you actually believe that it was, but I can imagine that it wasn’t. She called the Rotary clubs to help and women’s institutes and got a lot of help from the gaming trust which funds sports, education, and charities with their poker machines.
“When we first started they said that we’d have to do rat studies for five years. Well, they’ve been doing rat studies for forty years and the only thing that they've accomplished is to kill a lot of rats.” She also told me about where they could stick their rats, but I won’t tell you where. Her lab has done no rat studies. She told me that her lab was set up to do one thing – get ready for clinical trials to cure spinal cord injuries.
Knowing that both OEC and bone marrow cells have been proven safe in other studies, they have spent their time not killing rats, but purifying and improving their techniques for expanding the cells after they are taken from the subjects.
After dealing with the multi-regions ethics committee and having her protocol for the clinical trials blocked for four years and eight months, Mrs. Vallis fought back. She gathered a group of twelve politicians, and I can imagine that she used her charm on them. “If I don’t get approval, I’ll make it all public. All the blocking of our trials to cure people with spinal cord injury.” Two months later she got the approval and in June the trials should proceed.
“We know it won’t be a miracle,” she said, “but trials must start at some point. This is not spreading false hope, but testing the science is part of curing spinal cord injury.”
She has shown me that there is more than one way to skin a cat (or a rat).
Are you interested in helping to keep these trials running?
Please donate to the Spinal Cord Society New Zealand.