1 | Who is Kasey Altman?

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Kasey Altman was a 24-year-old writer, Googler, former collegiate athlete, adventurer and mother to Willow, her mini goldendoodle puppy. In October of 2020 she was diagnosed with a rare cancer (stage IV pediatric soft tissue sarcoma, fusion positive alveolar rhabdomyosarcoma — F+ ARMS). Since being diagnosed, she has been writing a book and speaking candidly about her experiences, both in presentations and on social media. She also launched a chart-topping podcast (“The Reroute”) with her sister.

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Google Presentation
Kasey was invited by her Google colleagues to share the experience of being diagnosed with cancer at 24, what she’s learned and how she’s grown. Watch it here: https://www.youtube.com/watch?v=-ee7ZFEE5NA

 

“The Reroute” Podcast
Sisters Karli and Kasey Altman have heart-to-hearts with incredible people about the unexpected detours that shifted the trajectory of their lives. Listen to it here: https://podcasts.apple.com/us/podcast/the-reroute-by-good-humans-only/id1552095743
or https://open.spotify.com/show/2PvlIuT4ahuBOEDa2aFkrY

 

Kasey’s Instagram
Since diagnosis, Kasey has been publishing her experiences and musings as an AYA (Adolescent & Young Adult) patient online, primarily through Instagram. https://www.instagram.com/kasey.altman/

 

Articles
Stage IV Cancer at 24: Channeling My Reroute into Purpose
https://thriveglobal.com/stories/stage-4-cancer-at-24-channeling-my-reroute-into-purpose/

I’m 24 and have a Rare, Late-Stage Cancer
https://kasey-altman.medium.com/im-24-years-old-and-have-a-rare-late-stage-cancer-92a30d795905

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2 | Kasey's problem

 

Kasey was diagnosed with a late-stage, metastatic, pediatric cancer and the standard of care yields dismal outcomes.

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The problems are:

1. The standard of care treatments haven’t historically worked very well.

2. The standard of care treatments are extremely toxic and leave the patient’s body depleted and compromised when faced with later rounds of treatment.

3. Finding alternatives has proven challenging given the nature of a rare cancer, lack of both resources & data.
   
   A precision immunotherapy trial is underway, currently seeking to develop a precision vaccine with Kasey being the first sarcoma patient. Inherent hurdles for development and responsiveness exist.

4. Assessing and prioritizing alternatives is hard.

5. Being confident that a non-standard alternative is the best is daunting. And,

6. Working with the medical establishment to get access and deliver the chosen non-standard therapy is challenging.

7. Kasey has already endured months of toxic chemotherapy and 33 cycles of intense proton therapy, with the cumulative effects of toxicity taking its toll. Treatments are limited and have not proven effective in staving off recurrence. With a low mutational burden (PAX3-FOX01 fusion), MYCN amplification and alterations arising (TP53, TET2), she needs your urgent expertise. Without alternatives, she will be left to follow a reactive path, seeking salvage treatments after her body and immune system have been compromised by cytotoxic effects.
   
    

3 | Hackathon Objectives

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To engage the latest developments in diagnostics, research and bioinformatics to determine the most effective treatment options, whether precision medicine, current treatment with cross-over potential, combinatorial therapy or novel options for Kasey’s rare cancer. Through this hackathon, Kasey’s goal is to turn the standard of care upside down and in real-time bring together “out of the box” thinkers to yield plan B, C, D & E treatments that will produce optimal outcomes.

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1. To get Kasey a prioritized list of treatment options that she can confidently exercise as soon as recommended, in addition to enabling access to these treatments.

2. To learn from Kasey’s decisions and make the takeaways available to other patients and providers, by publicizing the crowdsourced, hive mind approach to problem solving to the health industry.
   
    

4 | The Process

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Kasey will make her extensive inventory of medical data available to a crowd of participants for analysis and insights.

Weekly video chats will update participants on progress and specific questions that will help channel the research. An online discussion forum (via Slack) will enable asynchronous review of progress and opportunities for comments. A recorded version of the weekly updates will be posted shortly after for those who are unable to attend. Insights and recommendations will funnel into a global virtual “molecular tumor board” of leading rare and sarcoma cancer research oncologists and other experts.

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This exercise will take about two months. The plan is to launch on June 3, 2021 and complete in August 2021. We will then proceed with additional insights on ways to make this exceptional research, analysis, and community of leaders available to more people.

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5 | What It Means to Participate

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If you participate you should expect a culture of open participation, open data, and open results. You will be welcome to join weekly lightning update calls of 15 minutes on Thursdays at noon Eastern, and an online discussion forum.

If you have analytical tools, you are encouraged to apply them and share your analysis. If you have specialist knowledge, you may participate in smaller discussions or may be asked to be on the molecular tumor board.

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6 | Who Should Participate and Why

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Rare and sarcoma cancer patients, pathologists, scientists, researchers, medical professionals, bioinformaticians, oncologists and advocates with intermediate to advanced experience who would like to help Kasey are welcome to participate.

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By participating in the Kasey Altman hackathon, you will have the opportunity to contribute to a cure for Kasey and other cancer patients who have hit a wall, network with top influencers in the digital health and innovation community, and participate in cutting edge data analysis and therapy recommendations.