Rare Leader: Kristin Smedley, President of Curing Retinal Blindness Foundation

February 22, 2018

The Basics
Name: Kristin Smedley

: President

Organization: Curing Retinal Blindness Foundation

Disease focus: We fund research for CRB1 gene mutations that cause blindness.

Headquarters: Ivyland, Pennsylvania

How did you become involved in rare disease: My two sons are affected by CRB1 retinal disease.

Previous career: Elementary school teacher. I taught first and third grade.

Education: B.S. in elementary education from West Chester University.

The Organization
Organization’s mandate: We have two parts. We fund research to get to treatments for CRB1 retinal disease. We also, a couple of years ago, added a support and educational arm for families living with blindness. There are folks who will say you shouldn’t dilute. You should have a laser focus on one of those two areas, but honestly, I get the phone calls from parents who are sobbing and can’t get off the couch like I was years ago. It’s just too hard. We had to give them some resources.

Organization’s strategy:  Go far and wide as fast as we can. We’re an extremely rare disease in the rares. I’ve become incredibly skilled at marketing. It’s where I focused four years ago when I was trying to figure out where my strength would be. I really focused on getting our name out there and getting people aware at CRB1 and rare eye diseases. I joke that the “C” in CRB1 should be collaboration. I’m a serial collaborator. You can’t do it alone. We have Helen Keller’s quote as a theme of our work, “Alone we can do so little; together we can do so much.” Collaboration has gotten us far.

Funding strategy: For the past six years we’ve done grassroots events. We are adding on some bigger things. You can only do so many bike rides and cocktail hours. We’re now collaborating with another eye disease organization to co-fund a research project. And we partner with other organizations with the Million Dollar Bike Ride that Global Genes is a part of in Philadelphia at the University of Pennsylvania.

What’s changing at your organization in the next year: We’re looking at hiring an executive director. I have an incredible team. I’ve been doing this for almost seven years now. Running a nonprofit is not was I was trained to do. I’ve learned on the job, and I’ve learned where my talents are. I’m good at marketing. I’m a speaker now. We’re looking for someone outside of rare disease who can manage the organization and not be so close to it.

Management Style
Management philosophy: Mine is “All hands on deck.” I grew up in sports. I have this team thing. We’re all in this together. Everyone has to pitch in. I am very much a team type of person and serial collaborator. My team would probably tell you I try to have as much fun as possible in any given day and at any given task.

Guiding principles for running an effective organization: Respect: Respect of your team, respect of your work, and respect of people’s time. I love what I do. I love that I have the opportunity to do it. Eighteen years ago, when my first son was diagnosed, I was told there was no hope. When my first child was born, I was told that maybe in 50 years there’d be some kind of hope on the horizon. To find just nine years later that the folks here at Penn, with the growth of gene therapy, are starting a clinical trial for a rare eye disease—I’m over the moon that we are getting so close to treatments when I thought there’d be nothing.

Best way to keep your organization relevant: Tell our story and be visible. With blindness, it’s a tricky one. People don’t want to talk about it. I think its listed at as the second scariest thing next to death. Blindness is a hard one for for people to take in and consider, and its very negative. I had a very good friend say to me seven years ago that I would never raise any money because I’m too happy. People don’t associate blindness with happiness. Now I’m known as the happiest mom with blind kids. I’m just fighting for their quality of life. They are still going to be here and be healthy and wonderful.

Why people like working for you: People joke I can have fun in a cardboard box. There are so many hard things in life, why make things harder? I look for easy ways to do stuff. Most of the times I am upbeat and positive. I do have my days when I have to shut the door and start over the next day. I think everybody has to have restart days. I do try to make it fun, and I’m extremely grateful for everybody that pitches in, no matter if it’s someone who helps on the backend of a website, or someone who goes out and holds a golf tournament and raises $50,000, and everyone in between. I’m just an extremely grateful person.

Mentor: My parents are where a lot of my positivity and fun comes from. We didn’t have a lot growing up. I was one of five kids. It was pretty crazy in our house. We were a one car family. I think I learned from them that you can still embrace everything life has to offer. Life is going to be hard. It’s a given, so you have two choices: You can sit and sulk about it, or do something about it. Until this day they are a positive light in everything. They help with the kids and help with the foundation, and they couldn’t be happier and prouder doing it.

On the Job
What inspires you: This is the greatest time to involved in rare eye disease. We’ve just had Luxturna approved for a sister gene of ours. I keep joking that all eyes are on rare eye disease. It’s an exciting time to be in the field. There’s so much hope, and there’s been hope. People didn’t realize how much hope there was seven years ago. God bless the people who got on board with me when I said “Trust me on this. We’re going to do great things.” It’s an exhausting job, but energizing to see all the good stuff that’s happening. I can’t imagine my life right now if I wasn’t involved in all of this for seven years because of all the people I’ve met. There’s a lot of great people dedicating their lives to making this stuff happen.

What makes you hopeful: All of these people I’ve met. The researchers I get to meet, the ophthalmologists I get to meet dedicating their life’s work to getting us to the finish line.

Best organization decision: We are exploring getting a paid staff member. We used to say we are a 100 percent volunteer organization. I used to be so proud of that. I’m not so proud of that anymore simply because we need to invest in people and the organization to go further faster. I’m also pretty proud that we had a national rare eye disease day declared in Congress. Our congressman in 2015 submitted it in braille. It was the first piece of legislation in U.S. history ever submitted in braille. That, among other things, is how we kind of catapulted to the top of the food chain with everybody looking at our organization. That started (pardon the pun) opening peoples’ eyes to the resources that are necessary to have blind kids thrive.

Hardest lesson learned: Some people aren’t in it for the right reasons.

Toughest organization decision: We  had to cut ties with partnerships that just weren’t serving our mission.

Biggest missed opportunity: Not moving faster on paid staff. There are so many missed opportunities— or delayed opportunities—in the past year because we grew way faster than everybody imagined, and we just couldn’t keep up. I should have seen that coming two years ago. I was just nervous that we wouldn’t be able to keep the funding going and support someone. I didn’t want them to make a life decision and we couldn’t afford them. One other thing was that about four years ago I switched gears and wasn’t looking up and researching how to run a nonprofit anymore. I was looking up and researching how to be an entrepreneur. That made a huge difference.

Like best about the job: The families I get to meet, the kids’ stories, and sharing my experiences. I can now talk to the moms and say, “I was you. I was sitting on my couch crying for a couple of years. But guess what, do this, this, and this, and they are going to be alright.” The real reason for connection to other people is because I had zero connections to people with blind kids for the first several years of my journey and it was awful.

Like least about the job: That science isn’t predictable.

Pet peeve: Whiners.

First choice for a new career: I’m writing a movie script about my son’s baseball team

Personal Taste
Most influential book: Touch the Top of the World: A Blind Man’s Journey to Climb Farther than the Eye Can See: My Story by Erik Weihenmayer. He was the first blind person to summit Mount Everest. It changed by life.

Favorite movie: Hands down, Steel Magnolias, the ultimate chick flick.

Favorite music: National anthem and Me and My Bobby McGee by Janis Joplin

Favorite food: A really good salad. I don’t like to make salad myself. It’s too labor intensive. I don’t have time for it.

Guilty pleasure: Going out dancing with girlfriends.

Favorite way to spend free time: Cheering my kids on. I’m on every sideline and in every audience. I wear all the team spirit wear and their band T-shirts. I wear replica jerseys of my own kids’ jerseys . I love being at their gigs, events, and games. It’s the greatest. 

February 22, 2018
Photo: Kristin Smedley, president of the Curing Retinal Blindness Foundation

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