Turning Genetic Data into Hope for People Losing Their Sight
Youth-led action to support research and patients with rare eye diseases.
Our Missions
At innoyouth, we are a youth-led initiative committed to accelerating research and treatment for rare eye diseases through the power of data, community, and collaboration.
We believe that young people can make a real difference in medical research by connecting patients, researchers, and genetic data in meaningful ways.
Our journey began with a simple but urgent question:
“What can we do today to help those losing their sight?”
The Problem We Aim to Solve
Despite remarkable advances in genetic medicine, patients with rare eye diseases still face overwhelming challenges.
🔍 Fragmented Information
Most patients cannot access or make sense of their own genetic and diagnostic data.
🔗 Disconnected Communities
Patients and researchers often operate in silos, limiting collaboration and innovation.
⚠️ Lack of Interpretation Experts
Even when data is available, few specialists exist who can decode rare genetic variants.
These gaps delay diagnosis, hinder treatment development, and leave families in uncertainty.
We’re here to change that—one donor, one connection, one story at a time.
Our Partners
🧬 Onboarding Lab
A patient-centered precision medicine platform founded by a legally blind tech executive and a medical scientist from Seoul National University.
They’re pioneering tools for genetic interpretation and patient-data matching.
👁 EyeLoveChild
A rare eye disease awareness and advocacy initiative based in Korea.
They focus on early diagnosis and emotional support for pediatric patients and their families.
What We Do
At InnoYouth, we’re building a youth-powered ecosystem to accelerate research for rare eye diseases.
Our work bridges the gap between patients, researchers, and data — all through meaningful action.
🧬 Data Donor Recruitment
We invite individuals with rare eye diseases or genetic test results to contribute data that can advance research.
📢 Awareness Campaigns
We run digital campaigns, events, and storytelling projects to raise awareness about rare diseases and the power of data.
🖼 Creative Outreach
Our volunteers design infographics, videos, posters, and social content to educate the public and promote engagement.
🧑🏫 Youth-Led Education & Events
We host local and global events, collaborate with schools and clubs, and empower students to lead their own outreach.
🔍 Genetic Data Structuring & Research Support
We help structure de-identified data (e.g., OMIM extraction) for researchers and connect them with potential data donors.
🧠 Patient Storytelling & Interviews
With consent, we share personal stories of patients and donors to humanize data and inspire action.
Get Involved
There are many ways you can make a difference — whether by donating data, volunteering your time, or partnering with us.
🧬 Become a Data Donor
Support research by sharing your genetic or medical records.
🤝 Volunteer With Us
Join our outreach team and help us raise awareness.
Our Impact: Real Stories, Real Change
Behind every data point and every post is a real person — and a ripple of change.
Here’s what we've accomplished together so far.
About us
InnoYouth is a youth-led nonprofit organization based in Orange County, California, dedicated to connecting rare eye disease patients with researchers and building a virtuous cycle of genetic data sharing and research.
Through the power of technology, creativity, and education, we strive to transform raw data into human-centered stories—closing the gap in medical information and creating a bridge of hope for rare disease patients around the world.
Mission
Our mission is to build a data-driven research ecosystem for rare eye diseases, led by youth who serve as connectors among patients, researchers, and society.
We achieve this by:
- Recruiting genetic data donors and organizing structured datasets
- Facilitating connections between researchers and patients
- Raising public awareness of rare diseases
- Leading youth-driven education and creative outreach campaigns
- Fostering empathy through patient-centered storytelling
Vision
We envision a world where data is not just numbers, but a powerful tool for empathy and action.
At InnoYouth, we dream of a virtuous cycle where personal genetic information fuels research, and the resulting knowledge brings renewed hope to patients and families.
What began in developing countries like Mongolia is expanding into a global effort to enable borderless research collaboration and reduce disparities in access to healthcare.
Founder's Story
Ashton H. Jung, a high school student at Troy High School in Fullerton, California, founded InnoYouth with a deep passion for STEM and a strong sense of empathy for individuals with rare vision disorders.
Through sports like water polo and archery, Ashton developed discipline and focus—qualities that shaped their belief that connection and change can begin with data. With this vision, Ashton launched InnoYouth to amplify global voices and create meaningful impact through the power of youth and science.
Empower youth to turn data into hope.
Help us build a youth-powered ecosystem for rare disease research.
FAQs
What services do you offer?
InnoYouth is a youth-led nonprofit organization that connects rare eye disease patients, researchers, and genetic data to support research and raise awareness. We drive change through the power of data and storytelling.
Who can donate genetic information?
Anyone who has been diagnosed with a rare eye disease or has undergone genetic testing is welcome to participate. All data is de-identified and used solely for research purposes.
How is donated data used?
With proper consent, donated genetic information is cleaned and structured, then shared with trusted researchers to support diagnosis and treatment development.
How can I get involved?
You can join us as a volunteer, make a donation, or simply spread the word. Everyone has a role to play in making an impact.