Katy Bourne


Project Violet: One Girl’s Legacy

POSTED ON August 31, 2013 | POSTED IN: My Blog | 3 Comments
Violet & Randy

Violet & Randy

What if you could help a dynamic team of scientists use nature as a platform to create life-saving treatments for rare cancers and other diseases? What if you had a role in groundbreaking research that could radically change the way we think about treating disease? What if you had a chance to be part of a mission to bring hope to future generations of children who are diagnosed with cancers that are currently incurable? What if you could do something that had the potential to save the life of even one child?

Interested? Stick with me for a few beats.

Project Violet is a bold innovative venture that uses nature’s scaffolding to create new drugs for rare cancers and other incurable diseases. By making small proteins called  “Optides” (optimized peptides), the Project Violet scientists are able to glean from evolution and tap into designs that plants and animals have used for centuries to heal and protect themselves. These drugs not only have the potential to treat a wide range of diseases, but to do so in a manner that is less grueling than traditional protocols such as chemotherapy. “Tumor Paint” is the first drug to come out of this lab. Using tiny molecular “flashlights” attached to a targeting peptide found in scorpion venom, this drug literally lights up tumors and will hopefully allow neurosurgeons to better differentiate them from regular brain tissue when operating on a patient. This gives you an idea as to how the Project Violet  team thinks– way, way outside the box. Anything, from a spider to a petunia, has the potential to save lives. Big stuff, this. Mindblowing.

Project Violet was named after Violet O’Dell, who was a patient of Project Violet’s team leader Jim Olson. Violet was a spunky redhead who could make a connection with anyone. She had a magical ability to see the good in everything and to embrace all sides of any situation. Raised in a Christian family, Violet loved Jesus. She also loved her gay uncle. She saw the world through open and accepting eyes. She had a profound impact on Olson. “A higher spirit was present in her,” he recalls. Violet had a brainstem glioma, an inoperable and incurable cancer. Because brainstem gliomas are so rare, little research has been done towards a cure. While the treatment is aggressive,  the prognosis is heartbreakingly bleak. Violet died when she was just 11 years old.

What if this were your child?

Less than one percent of the National Cancer Institute’s budget goes towards pediatric cancers. The few that do get funded are more common cancers such as leukemia. The trajectory of a new drug is arduous and complex. The process begins in academic institutes. Research is done to determine if the candidate has promising “drug properties” and, as Olson explains, “does what it is supposed to do in laboratory studies on efficacy.”  If the drug candidate clears these hurdles, a pharmaceutical or biotech company licenses the technology developed by the academic researchers, moves the drug through remaining pre-clinical studies and on to human clinical trials. The average cost to develop a drug ranges between 4.2 to 11.7 billion dollars and takes between ten and twenty years to complete. Unfortunately, the drug industry operates under the same principles of capitalism that any other industry does. Pharmaceutical companies are not inclined to spend such large sums of money on drugs that will not turn a significant profit. As appalling as it is to consider, this is the grim reality. Children with rare diseases such as brainstem glioma have little, if any, hope.

Tumor Paint cost less than 20 million dollars to develop and took roughly ten years. Olson predicts that the Project Violet team will be able to create 50 drugs for the same amount of money and time that it would take a drug company to do one or two. The implications of this are huge. Perhaps there is hope after all.

This is where you come in.

Project Violet’s approach to funding is as creative as its approach to research. With a donation of just $100.00, you can “adopt a drug” and participate in aspects of its development, such as choosing which cell to start with (spider, potato, etc.), which protein to attach the cell to and what to name the drug. You will receive updates about the research and learn more about the science behind it. For just 100 bucks, you set the ball in motion to discover a drug that could potentially save lives, a drug that might not otherwise be investigated. You have a seat at the table. You accelerate the steady march to hope.

By using the “Citizen Science” model, Project Violet not only raises funds for critical research but also offers the public a unique way to engage in the scientific process. While everyone is encouraged to become involved, Olson is particularly interested in school-aged kids. In his view, the science curriculum in many schools is geared towards standardized tests and is not investigative in nature. When classrooms* adopt a drug, students can learn about the role that nature plays in the development of these drugs and can make a connection between science and the real world. The big-picture hope is  to cultivate a new generation of wildly creative scientists, who are willing to think bigger,  to take risks and, sometimes, to fail. Olson believes that these are the types of people who will best serve the needs of modern science. Project Violet is currently working with game developers, educational specialists and social media experts to come up with fresh ways to keep kids engaged for the long haul. Facebook, Twitter and phone applications could be the key. “I always like to meet kids where they’re at,” Olson says. He also believes that families of sick children are vital to the success of Project Violet. Some of the team’s best ideas come from conversations with parents. It was a question from a parent that sparked the investigation that ultimately led to Tumor Paint.

The Project Violet Team

The Project Violet Team

In the 1970’s, pediatric oncologists from around the world decided to work together and to share information freely. Since that time, the odds of survival for a child with cancer have gone from 5% to 76%. This collaborative spirit has saved countless lives and demonstrates the astonishing power of a global community. Project Violet is part of that community. You can be too. When you adopt a drug, you are investing in research that has the potential to cure the incurable. You are providing the means for dedicated scientists to blaze at their highest level. You are bringing hope to children and families who have none.

You have the power. (And that’s pretty incredible.)

Violet loved nature and being in the garden. She loved animals. For her Make-A-Wish request, Violet asked for a dog. She named him Randy after another patient who was going through treatment at the same time she was. Violet recognized humor as healing. When the cancer had progressed to the point where she could no longer speak, she blew bubbles in her pudding as a way of bringing levity to somber moments.

Violet knew that she was dying. One day, she noticed the donor heart on her mother’s driver’s license and asked her what it meant. This led to an important conversation between Violet and her parents. Violet wanted to donate her brain to research so that other kids would not have to suffer as she had. It was a big decision and in the end, Violet’s request was granted.

Violet gave what she had to give.

How about you?

 

***

“I dream that before I retire, I will be able to walk into the room of a child with newly diagnosed brainstem glioma and tell them that there is hope for survival. I don’t care whether the advances come from our team or someone else – but I think we have the intellectual power, fortitude, strategic mindset and motivation to contend for the honor of finding a way to dampen the rage of this cancer.”

              –Dr. Jim Olson

Dr. Jim Olson

Dr. Jim Olson

To adopt a drug:

https://www.projectviolet.org/adoptdonate/adopt-drug-candidate

To learn more about Project Violet:

https://www.projectviolet.org

To see Dr. Olson’s TEDx Seattle talk about Project Violet:

http://www.youtube.com/watch?v=7IWMJhg2Zlc&feature=youtu.be

“Bringing Light,” a video about Tumor Paint:

http://vimeo.com/51888804

*Classrooms can adopt a drug for $1000.00. A school can adopt a drug for $10,000.00.

 

 

 

Comments

3 responses to “Project Violet: One Girl’s Legacy”

  1. Martha says:

    Katy – Thank you for writing about the innovative work Jim Olsen & his team are doing & for getting the word out about how individuals can support them. The idea to involve school classes is brilliant & hopefully their media campaign will be successful. I’m happy to repost & share.

    • admin says:

      Thanks so much for helping spread the word. EVERYTHING, from adopting a drug to simply reposting this link, helps!

  2. […] most meaningful and inspiring experiences for me this year was hanging out with the scientists from Project Violet. Their creativity, passion and dedication restored my sense of optimism and gave me renewed hope […]

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Katy Bourne is a Jazz Singer and Writer.