Roberta Smith

I just feel like I'm on a trajectory in my life to do as much as I can to help people that are living with this disorder and/or rare disease. I have skill set that I've been able to help lead this organization in a way that we're really checking off a lot of boxes. The people that we help support in this rare disease community, they're such an amazing group of people and I'm just so thrilled and honored and it's truly a privilege to be able to support them.

It's such a challenging industry simply because I think there's an expectation sometimes that small organizations should run on bare bones, that volunteers or leadership should not be paid. I think we have to have an understanding that an organization runs like a business and we have to put the boundaries in place so that nobody is being run into the ground. Setting boundaries for an organization and for the leadership and for the staff and volunteers is really important. Making sure that there's a framework with which to grow, making sure that we see what does the organization look like in 3 years, 5 years, 10 years, what do we want to achieve, and how do we get there with the staff that we have and with growth mindset versus just trying to keep your nose to the grindstone.

Some of the biggest challenges for a small organization like ours is getting in front of investors, funders, maybe even pharma and scientists to look into the disorder as well. Funding is always going to be an issue for small nonprofits like ours. Trying to get this disease in front of those who can actually make change scientifically and research-wise or treatment-wise. We now currently have two FDA-approved drugs and to have that as a rare disease is incredible. We just want to continue the momentum and keep eligible syndrome in the limelight. Knowledge is key and that's what we're here to do. The second piece is always striving to make sure that we make life easier for those who are living with the disease whether that is helping them financially, making sure they have fuel to get to their appointments, providing support.

I think having integrity is a really important value. I think authenticity and being genuine to the experiences you've had in your life, understanding that how it shapes you, shapes your future and not being a victim of circumstance. Instead trying to find the lemonade with the lemons. You can get through it in a positive way, that's the kind of a legacy that I want to leave. To do something positive with the hand that you're given. We all have hardship and what you do with that means a lot to the people around you.