Theresa Byrnes
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The Daily Telegraph
August 10, 1996

Artist Theresa Byrnes is passionate — about her art and about raising money for genetic research. While her first passion enriches lives, the second may save many, including her own.


THERESA Byrnes knows what she’s talking about when she speaks of “trusting the disorder”.

First and foremost, Byrnes, 27, is an artist.

She sold 70 paintings last year, and has sold 20 this year.

Byrnes also has a life-threatening degenerative nerve disease known as Friedreich’s Ataxia (FA).

The “disorders” of her life are the passion of abstract painting, and the passion to find a cure for FA.

“Art and genetic therapy are where it’s at for me, and I think they’re two of the most powerful things you can do with your life,” Byrnes said.

To compensate for the rent of her studio in the Scots Church, corner York and Jamison streets, City, she has painted a giant four-piece abstract work The Awakening, for the Presbyterian Church. And she is working hard to fund research into a cure for FA.

Byrnes talks about finding perfection in disorder, in her art and her life.

“I trust this process I’m going through. I know it’s going to be okay. I know I’m going to raise the money and that I'm going to cure myself, and everyone else with FA is going to be okay. Then I’ll go on and I’ll keep on raising money for other young, degenerative genetic disorders,” she said.

It has taken time for Byrnes to become so focused and positive about her disorder, but she has always known her art came first.

“I've been a totally dedicated artist, a painter, since I was 16,” Byrnes said.

She got her first studio at 16, sharing with an older sculptor, Amanda Heart.

However, in her late teens, while she was starting to come to terms with FA, Byrnes had the unusual experience of a spiritual calling in her dreams. The dreams encouraged her to explore Arnhem Land, to visit a tribe there.

“Because I’m into following that kind of thing, I went there. I met [ actor

and activist] Burnum Burnum, I lived with a community.

Byrnes visited the Territory at the ages of 20 and 23, the first time she was walking, but was a bit stumbly, the second time she was using a walking frame.

“I spent a lot of time sitting in the landscape. Up to like 24 hours, and 12 hours, I really learned patience,” Byrnes said.

As a result of visits to the Territory, she has an adopted Aboriginal family, and a great biological family.

Byrnes spent three years with the walking frame and last October moved into a wheelchair, as the FA had progressed.

Byrnes says her attitude to her paint-spattered wheelchair is her “best-kept secret”.

“I can get down the street, spin my -w have w walk long distances, I can stack myself up with my mobile phone, my files, my shopping, my lunch, it's like my portable loungeroom, she said.

“Even though I had a lot of emotional baggage about getting into a wheelchair, and I thought I’d kill myself, because it represented being totally stuffed . . . it’s been emancipating in a lot of ways.

“And now if someone bumps into me, they hurt themselves,” Byrnes said, with more than a hint of delight.

The disease which has put Byrnes in a wheelchair is also going to limit her painting career.

“Realistically, I’ve got four years left in which I can paint,” Byrnes said.

Dr Ian Alexander, researcher at New Children’s Hospital, Westmead, is reluctant to put a figure on FA sufferers’ time.

Finding a cure through the 21st century medicine of genetic therapy is his priority.

“They’ve actually found the gene, the little instruction that is defective in Friedreich’s,” Dr Alexander said.

“Scientists estimate that humans have 70,000 to 100,000 different genes, so finding it is like finding needle in a haystack, it is a major advance.”

But although the gene is isolated, helping sufferers using gene therapy is a long way off.

One person in 110 people has the faulty FA gene. Even though they are “carriers” they lead perfectly normal lives. If two people with the genes (two carriers) have children, they have a one in four chance of giving birth to a child with a double dose of the faulty FA gene. One in 50,000 people is born with FA.

Each person probably has half a dozen faulty genes, but because we get genes in pairs, one from each parent, we are usually protected from genetic disorders,” Dr. Alexander said.

Research into A will not only benefit the one in 50,000, but the broader community.

“If we can find ways of treating Friedreich’s then it’s likely that will have implications for treating lots of other diseases that involve problems in the nervous system, Dr Alexander said, citing degenerative diseases such as Parkinson’s Syndrome and some forms of Alzheimer’s.

“The challenge is: can we take a normal copy of the [FA] gene now that it’s been isolated, and deliver it to those cells in the nervous system that are made sick by the disease?

“When we think of the major advances in medicine, like the development of antibiotics and anaesthetics, gene therapy is potentially as big as those, but at this stage it’s in its infancy.”

With the disease looming over her life, Byrnes has a clear vision of her aims.

“I am going well with FA, but ultimately I’ve got to look at the whole prognosis that I’m going to be dead in 10 years, and the latter part, I'm going to be a complete vegetable,” she said

“I’m losing skills, like my speech slurs and it’s really hard to let go — it’s like losing your best friend slowly, but it’s yourself.

“My ultimate aim through my artwork was to enlighten people to their freedom and power and FA has made me realise that probably the most powerful way to heal the world or make it a better place is to fix the young people with genetic disorders.”

Painting The Awakening series was one way for Byrnes to express the freedom and power she talks about.

“The line to me represents the line of human consciousness,” she said “It's also about freedom and not worrying and not over-cerebralising everything, and having no fear and no doubt and just going with the flow.

“I wanted to make people feel in awe, almost a religious kind of feeling.”

When Byrnes was negotiating the rental of her studio with Presbyterian Church of

Australia secretary Keith Marr, he suggested she paint a series for the church in return for the use of the studio. She had found a like-minded soul in the church.

“I said, ‘Well, you know I don’t believe in God, I’m not a religious person, and I’m not a Presbyterian’,” Byrnes said.

Mr. Marr replied that best way to express God is in an abstract way.

“We just shook hands and that was it — he’s a pretty cool dude,” Byrnes said.

“I said to him. ‘It’s really courageous of you to commission this because It’s going to challenge a lot of people because its not your typical crucifixion scene’.”

The Awakening is launched today as is the Theresa Byrnes Foundation for scientific research into a cure for FA.

Byrnes will have her own show of recent works in October and plans to travel to the US in December.

“I’m very happy with the way my career has gone over the last 10 years. I exhibit once every year at least, I have a good group of collectors all over Australia and a couple of overseas collectors she said.

“I’d like to travel the world exhibiting, I’d like to have my work in the Art Gallery of NSW, I’m the same as any artist, I guess.”

For now, every spare cent goes back into art materials, and Byrnes’ energy goes into the fight for funding. FA research needs one researcher devoted to the task for three years to make a start.

“My dream, apart from my life and my work is to fund the development of a cure for FA so no other young person ever has to go through it,” Byrnes said.

“It’s just $200,000, I mean it’s a joke, it’s a total crime,” she said.

“If I didn’t have FA I would never have realised how little money it takes to affect so many people on a genetic level, it’s the burgeoning of a whole new science.

“If we can just get $200,000 for three years it s very hopeful that we could make the treatment here and start leading the world in this kind of genetics or at least be a major player. I don’t forget that this whole thing is about attempting to save my life.

“And because it’s such a relatively small amount of money the story can have a happy ending and it s something the whole country could be proud of.”

The Theresa Byrnes Foundation Inc will be officially launched today. Donations can be sent to P0 Box 1888, Strawberry Hills, 2012. All of the funds will go directly into research.