{"id":705,"date":"2019-09-10T22:11:12","date_gmt":"2019-09-11T02:11:12","guid":{"rendered":"https:\/\/nebula.org\/blog\/?p=705"},"modified":"2020-12-26T23:57:19","modified_gmt":"2020-12-27T04:57:19","slug":"coffee-with-customers-irene-cross","status":"publish","type":"post","link":"https:\/\/nebula.org\/blog\/coffee-with-customers-irene-cross\/","title":{"rendered":"Coffee & Conversations: Why did Irene choose Nebula?"},"content":{"rendered":"\n

Personal stories remind us why we do what we do.
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Starring:<\/strong> Irene Cross
Created by:<\/strong> Kaline Langley & Ken Vetrano
Photography by:<\/strong> Kaline Langley
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The coffee and pastries splayed across her wooden table are forgotten as Irene Cross speaks. It\u2019s quiet in her apartment, the light taps of rain on the window seem to come from far away as we lean in to listen. As she recounts her life\u2019s history, she explains: <\/p>\n\n\n\n

\u201cEverybody has a story\u2026 if they just have somebody who is interested in hearing it,\u201d<\/strong>
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Irene is an eighty-three year old mother of two and grandmother of two, a lover of terra cotta, and a genomics enthusiast. Irene was also diagnosed with ovarian cancer over thirty years ago, and remembers the confusion as well as the terror.
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And Irene isn\u2019t the only one. 
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We all share a common experience to some degree. We all have stories about Monday morning\u2019s spilled coffee or a flat tire. But only some experience Monday morning\u2019s heart monitor beeps, the hushed whispers of nurses, or the impending silence of an unsaid inevitability. For Irene, the latter was how she lived, waiting in angst for a diagnosis to a cancer that affects millions of women each year. <\/em>She says:<\/p>\n\n\n\n

\u201cI get emotional\u2026 because when I hear of people getting ovarian cancer, it\u2019s a sisterhood of sorrow,\u201d<\/strong>
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Sometimes, these stories can be cut short. Lives can be reduced to a single illness that may have a cure, but leaves in its wake debilitating symptoms. Others face illnesses with no cure at all. Patients and researchers alike continue to work hard to seek answers to these illnesses. By meticulously combing through every available avenue, we all aim to help cure, educate, and be able to add more chapters to our story. We want to help extend our stories so we can share our experiences with strangers over coffee.
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Over the past decade, there has been a boom in the amount of data available to the scientific community. Led by the plummeting cost of DNA sequencing, more and more patient genomes are being sequenced. Further, at-home DNA tests now give anyone access to their genetic information. But while this revolution in genomic access has proven powerful for researchers, patients, and the simply curious, it has not been without its drawbacks. Questions over data ownership and security have eroded public trust, causing people to miss out on gaining genetic insights about their ancestry, traits, and disease risks. With fewer genomes available to examine, scientists are limited in what they can discover, slowing down progress in the race to cure diseases like the one faced by Irene.
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Why does genomic data sharing even matter? <\/em><\/strong>
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\u201cMost people who have had a life-threatening illness are eager to share it. There\u2019s a lot of people who would want to help people who have those illnesses.\u201d <\/em><\/strong>
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For many people, their homes are private sanctuaries reserved to family and friends. But that\u2019s not Irene, she\u2019s the type of person who enjoys sharing personal experiences. Though we had never met Irene before last week, she opened her doors wide and her arms even wider with embrace as we quickly became friends.
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This is what attracted her to our service as an early adopter\u2013the ability to learn more about herself and the chance to participate in humanity’s genomic story, or in her own words; <\/p>\n\n\n\n

\u201c[with Nebula] there would be more genes analyzed than with 23andMe and I\u2019m one of those who think more is better.” <\/em><\/strong><\/p><\/blockquote>\n\n\n\n

The ability to sequence more genes gives science the opportunity to study numerous variations of genes from different people. Having robust, genetically diverse pools of data is vital for research and finding cures for [rare] diseases. Irene wants the same thing we do, and that\u2019s making sure future generations are able to share their stories\u2013because everyone deserves the chance to live a long, fulfilling life.
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Human longevity is important for Irene. She\u2019s already armed her family with as much knowledge as possible regarding the power that comes for both consumers and researchers with genomic sequencing. As a result, both her son and daughter have chosen to get sequenced with Nebula Genomics. Their mission is clear: that as more people share their genes, more information will be revealed about their own.
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