I never expected to launch a worldwide organization. Never ever thought I'd have to know about braille, or retinas, or genetic mutations. And I had no idea I would be dealt a double dose of darkness....
It was a one-two punch to the gut: both of my boys were diagnosed as blind when they were each 4 months old. I had never even met a blind person, yet I quickly learned how to find the tools blind children need and got them in the hands of my boys, literally. With the right foundation and a multitude of resources, they have become accomplished athletes, high achieving students, talented musicians, and social butterflies. Oh, and international Braille competition finalists too.
In May 2011, I connected with other families living with the same rare disease my boys have, and launched a mission to fund a cure. No advanced degree. Never created a website before. Had no idea about grants, or IRB's... the list goes on.
I learned how to build a team, nearby and remote, of people that know how to do the things I don't. I spend nearly every minute of every day networking with people that can help either medically, financially, or otherwise. No connection is too small, as I have found some of the greatest resources in the oddest places.
In just six years, I've led our Foundation to make progress we thought would take much longer and people are calling on us daily to be a part of a miracle that seemed impossible less than a decade ago. We've raised over one million dollars, made history in the US Congress with the first ever rare eye disease resolution submitted in Braille, and have skyrocketed our little rare disease to the top of mind of many industry leaders - and I am just getting started.