Rare Leader: Justin Porcano, Co-Founder and Executive Director, Save Sight Now

The Basics
Name: Justin Porcano

Title: Co-Founder and executive director

Organization: Save Sight Now

Social Media Links:

Disease focus: Usher Syndrome Type 1B

Headquarters: San Rafael, California

How did you become involved in rare disease: Our 2-year-old daughter has Usher1B

Previous career: I currently work as an industrial and user experience designer

Education: BARCH Architecture and BS in Industrial Design, Philadelphia University

The Organization
Organization’s mission: Usher Syndrome Type1B robs children of their hearing at birth. We want to ensure it also doesn’t also take their vision. We’re focused on finding a treatment for Usher 1B related retinitis pigmentosa in the next two to five years. With the approval of Luxturna—the first FDA approved gene therapy for a genetic disease—inherited retinal disease treatments are being discovered, tested, proven, and manufactured today. We’re finding and identifying research teams that are working on the most promising strategies that can save the vision of Ush1B patients and helping them get to clinical trials.

Organization’s strategy: We are fiscally sponsored by the Foundation Fighting Blindness—the world’s leading inherited retinal disease foundation funding medical research. We are strictly focused on raising money for research. With the help of the FFB and their scientific advisory board, we are identifying leading research teams working on Ush1B or applicable genetic strategies. We are also organizing willing patients and families within the Usher Syndrome community to help us raise awareness, as well as fundraise for Save Sight Now.

Funding strategy: We’re fundraising on multiple fronts, with the ultimate goal of securing long term recurring donors. We host several online crowdfunding events a year and help our Ush1B families do the same. We are planning one to two in-person fundraisers a year and hope our Ush1B families do the same. We are also approaching small, local, and larger businesses in hopes they will be sympathetic to our cause and become recurring supporters and donors through hosting events, sales, or direct donations.

What’s changing at your organization in the next year: Considering this was our first year, we’ll be re-evaluating our fundraising strategies and focusing more time on what has been the most successful for us. We’re also hoping to recruit more families who want to be involved

Management Style
Management philosophy: Lead by example

Guiding principles for running an effective organization: Understand your audience and what motivates them. Make sure your message is clear and relatable. Treat your donors like friends and family (most of them are). Be persistent. And self-reflect often to learn from your mistakes and adapt.

Best way to keep your organization relevant: Share the progress you make. Keep evolving your digital strategy.

Why do people like working with you: I’m direct, supportive, and motivated

Mentor: My wife and co-founder Rosalyn

On the Job
What inspires you: My daughter

What makes you hopeful: Advances in modern medicine

Best organization decision: Fiscal sponsorship with the Foundation Fighting Blindness (our fiscal sponsor)

Hardest lesson learned: Not everyone in your rare disease community wants to help

Toughest organization decision: Fiscal sponsorship with the FFB

Biggest missed opportunity: Leveraging the other company I work full time for (to be continued…)

Like best about the job: Having real impact on advancing research

Like least about the job: The time it takes away from my family

Pet peeve: Individuals who say they want to help and never do

First choice for a new career: Fishing guide

Personal Taste
Most influential book: Into the Wild by Jon Krakauer

Favorite movie: Too many to name (Whiplash, Birdman, Crash, Memento)

Favorite music: 90’s Hip Hop

Favorite food: Fried Chicken

Guilty pleasure: Cotton candy

Favorite way to spend free time: At the beach with the family