Jake Olson's Reps For Retinoblastoma

My mom and doctor didn’t know I was listening to their conversation.

“No more options,” my doctor said. “We will have to remove his remaining eye.”,

I held the old, bulky telephone closer to my ear and the unthinkable reality of going blind sunk in. It was similar to previous conversations, but the past seven times my cancer returned we had a solution that wouldn’t cost me my sight. I was 12 years old.

My sudden screaming cut their conversation short. As my mom ran upstairs to console me, I pleaded with her: How could we not fight it with something?

More chemo? I had already undergone a lifetime max of systemic chemo. More radiation? No, I had maxed out and was at a high risk of inducing a secondary fatal cancer. More laser treatment or cryotherapy? The cancer had become immune, it would no longer affect the tumors. How about where they go up my leg? No, the cancer would no longer respond to intra-arterial chemotherapy, we have done it too many times. PLEASE, I was begging, ANYTHING!

Retinoblastoma is an aggressive, rare, fast-moving form of eye cancer located in the retina. In cases where all treatment options have been exhausted, removal of the eye is necessary to save the life of the child. It cost me my left eye at eight months old and my right eye at 12. However, even after losing my sight, I have never let it stop me or become an excuse to not live my life to the fullest.

In almost a decade without sight, I have shot in the 70s in golf, graduated high school with honors, become a professional speaker and author, set up my own foundation to help others, and started my own company, Engage. I played Division I football at USC, and I will graduate with a bachelor’s degree in business administration in May.

I can now look back at the scared 12-year-old boy who was eavesdropping on a phone call that would forever change his life and see that devastating moment as an enormous blessing. I knew that my resilience, my persistence to fight even after defeat, would define my future.

I have learned that in every set back there is a set up waiting to happen, I have learned to listen to the winner within telling me what I’m worth, I have learned to leverage failure without pointing fingers, and I have learned the power of gratitude. However, despite these lessons and accomplishments, I still remember the pain, sorrow, and agony that I endured as a child battling Retinoblastoma. For this reason, I am determined to cure the disease that took my eye sight, and I could not have chosen a more opportune time.

Over the last 20 years, my childhood doctor, Dr. Linn Murphree and his partner, Dr. Brenda Gallie, with the help of researcher David Carpi at 3T, have developed a device that has shown the ability to cure even the most severe cases of Retinoblastoma, even cases like mine.

The Episcleral Topotecan device, or what we’ll refer to as the chemo plaque, is a non-invasive reservoir that is implanted in the eye. The device delivers direct chemo, Topotecan, to the tumors and vitreous seeds located within the eye and the results have been astounding. Last year, two children who had one tumorous eye left and who had maxed out on every other treatment option, were completely cured through the use of the chemo plaque.

I remember hearing about the development of this plaque around the time of my surgery and the reality is that this Episcleral device would have allowed me to see today. Even though it was too late for me, it doesn’t have to be too late for the children who are facing the same reality I did nine years ago.

Episcleral Topotecan needs funding in order to undergo a clinical trial that will eventually make it the standard for treating Retinoblastoma. I am raising money through my pro-day bench press on March 20th so that no child has to lose their sight again to the cancer that took mine. I am asking for your help. All funds will be directed to Uplifting Athletes and Doctor Gallie and will go towards funding the Episcleral clinical trial. Thank you for joining me in my mission to cure this disease for good as I rep it out for Retinoblastoma.

Fight On!

Jake Olson

Jake Olson ESPN Feature Video

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Please join me in supporting Dr. Gallie’s Retinoblastoma Research and Uplifting Athletes by pledging for every bench press rep I perform (my goal is 20) at USC Pro Day on March 20th.

Please join my team by making a pledge today!

How you can help

· Pledge for each bench press rep I perform at USC Pro Day.

· Make a one-time flat donation

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About Retinoblastoma Research

Brenda L. Gallie, CM, OOnt, MD, FRCSC

• Director, Retinoblastoma Program, Department Ophthalmology & Vision Science, SickKids Hospital, Toronto
• Adjunct Scientist and Lead of Health Informatics Research, Techna Institute, University Health Network
• Professor, Departments of Ophthalmology, Medical Biophysics, Molecular Genetics, University of Toronto

A. Linn Murphree, MD, FACS

• Children’s Hospital Los Angeles

Dr. Gallie and Dr. Murphree have each, and together, developed state-of-the-art care for retinoblastoma, serving children and families worldwide. For more than 40 years, their research has focused on knowledge to optimize care for retinoblastoma. Their studies revealed the essential genetic basis of cancer and delivered personalized medicine for families where awareness and resources can achieve 98% survival. Globally, 70% of children with retinoblastoma still die. To address this disparity, Dr. Gallie is implementing a novel retinoblastoma point-of-care database, DEPICT HEALTH, with the primary objective to enhance communication across each patient’s circle of care including parents and patients. DEPICT HEALTH will also capture high quality data to fuel unprecedented global research and support high-level evidence-based care.

Dr. Murphree advanced care for retinoblastoma patients in 2005 with the International Intraocular Retinoblastoma Classification (IIRC). This improved therapy choices by simply Grouping eyes with retinoblastoma based on the disease features that would best serve the whole child. For example, a “Group A” eye could be treated with only focal therapy (laser or freezing), but a “Group E” eye was dangerous to life and needed to be removed. The IIRC classification has now evolved, with evidence, into the Tumor/Node/Metastasis cancer staging, with “H” for heritability a unique addition for retinoblastoma (TNMH).

For more than 20 years, Dr. Murphree worked to deliver chemotherapy to the eye by diffusion from a device outside the eye, to avoid the nasty side-effects of chemotherapy given intravenously. In June 2018, Linn told me that the “Chemoplaque” had received Federal Drug Administration approval. With approval from Health Canada for emergency use of the Chemoplaque, two children in imminent danger of each losing their only eyes, that had failed all conventional therapies have been treated with the Chemoplaque. The tumors rapidly resolved and the children experienced no toxicity or pain. The Chemoplaques were easy to insert and remove after 70 days. Each eye has received further therapies, made possible by the Chemoplaque. We remain optimistic they can be saved.

We are now initiating a formal clinical trial to evaluate the full role of the Chemoplaque, using DEPICT HEALTH for eligibility and follow-up data. Clinical Trials have rarely succeeded in retinoblastoma because of disease complexity and rareness but are essential to fully evaluate efficacy and safety of a new therapy. The organization and oversight of a Clinical Trial has significant cost.

In summary, the preliminary results of the Chemoplaque in two eyes of two children are remarkable and game changing. We predict that this new ocular drug delivery system will be transformative in retinoblastoma and ophthalmology.

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About Uplifting Athletes

In 2016 Jake Olson was named the Uplifting Athletes Rare Disease Champion as a result of being an incredible inspiration to the Rare Disease Community and those affected by Retinoblastoma.

A nonprofit organization founded in 2007, Uplifting Athletes inspires the Rare Disease Community with hope through the power of sport. A rare disease is one that affects fewer than 200,000 Americans and typically lacks financial incentive to make and market new treatments.

Uplifting Athletes fulfills its mission through a network of college football student-athlete led chapters, Uplifting Ambassadors and Team UA participants. Since its inception, Uplifting Athletes has raised more than $4.5 million in support of the Rare Disease Community with a third of that, $1.5 million, given to fund rare disease research.

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Proceeds

Funds raised up to US$200,000 will be split 50/50 between Retinoblastoma research supporting Dr. Brenda Gallie and Uplifting Athletes. For proceeds above and beyond US$200,000, 80% will be directed towards Dr. Brenda Gallie’s research and 20% will be directed to support Uplifting Athletes and their mission to inspire the Rare Disease Community with hope through the power of sport.