Name: Amber Freed
Title: Founder and CEO
Organization: SLC6A1 Connect
Social Media Links:
Disease focus: SLC6A1, a genetic neurodevelopmental disorder that is progressive. It begins with developmental delays and movement disorder and can cause a form of epilepsy.
How did you become involved in rare disease: My one-year-old son was diagnosed with SLC6A1.
Previous career: I was an equity analyst covering the consumer sector.
Education: Bachelor’s degree in accounting from the University of Denver; Master’s degree in accounting from the University of Denver.
Organization’s mission: To develop a cure for SLC6A1 by funding innovative research.
Organization’s strategy: We identify the most talented scientists in the field to develop novel treatment solutions that will ultimately cure SLC6A1.
Funding strategy: Because we are a fairly young organization, it has been a lot of individual donors up to this point. Now that we’ve had some success—we have some data back—we are able to go after foundation money.
What’s changing at your organization in the next year: By this time next year, we hope to be advancing a phase 1 clinical trial for gene replacement therapy. We’re going to wipe this disease off the map.
Management philosophy: My daily goal is to work myself out of a job because a cure has been identified. My management style is to be a relentless advocate because children are depending on us.
Guiding principles for running an effective organization: Collaboration, project management, identifying key stakeholders, and being a source of hope.
Best way to keep your organization relevant: The best way to keep an organization relevant is to keep advancing research that will help not only the kids with SLC6A1, but the greater rare disease community at hand. It is critical to communicate what we are doing to the greater community, which involves heavy social media. You have to keep people emotionally involved in your cause and help them understand the greater opportunity at hand. All of this must be done in a 15 second blurb–once a week.
Why people like working with you: I think people like working with me because I’m an endless source of energy and I would never ask something of somebody that I don’t expect of myself. I put at least 80 hours a week into finding a cure for this terrible, neurological disease and I have accepted nothing less than success for my community. I have very high standards and I’m intense but I’m effective and I have a sense of humor. I try not to take life too seriously, which is hard when you’re working in the rare disease space. Rare diseases are a heavy subject filled with many heart wrenching stories.
Mentor: All of parents who came before me. I wouldn’t say “mentor” is the right word. I’d say “heroes.” I wouldn’t be able to do what I’m doing if I weren’t able to stand on the backs of giants who came before me.
On the Job
What inspires you: I’m inspired by knowing that the cure is out there and the possibilities are endless. I look at the faces of the innocent children that did not deserve this disease and I feel a gravitational pull to correct this injustice as quickly as possible.
What makes you hopeful: What makes me hopeful is speaking with scientists and knowing it’s a matter of time before treatments come into existence for many rare diseases.
Best organization decision: The best decision has been to find the right talent, those people who can impact our community the most.
Hardest lesson learned: The hardest lesson learned has been that many chronic diseases families are exhausted, beaten down, defeated and stretched to the limit. The last thing that they’re able to do is focus on non-profit efforts. The rare disease community is a club nobody would want to join and it’s heartbreaking to see the sadness in their eyes.
Toughest organization decision: There is never enough funding so my organization made a couple of big bets early on the most viable treatment options. There is always fear that I made the wrong decision. Lives are depending on me.
Biggest missed opportunity: We haven’t had any missed opportunities because I’ve chased every opportunity imaginable at the expense of sleeping and eating.
Like best about the job: I know I’m helping families. I know I am helping children and what I am doing has a direct impact.
Like least about the job: Becoming a patient advocate, molecular biologist, project manager, fundraiser, and other roles were forced upon me when my child became ill. This situation is every parent’s worst nightmare and it’s a job I never wanted to have. My family made the decision to fight with every ounce of our soul.
Pet peeve: People who do not follow up. I feel the majority of what I do every day is herd cats. I’ve had to send people snacks via UberEats in order to get a response.
First choice for a new career: I would like to form a vertically integrated business platform that can advance rare disease treatments to go from bench to bedside.
Most influential book: Freakonomics: A Rogue Economist Explores the Hidden Side of Everything by Steven D. Levitt and Stephen J. Dubner
Favorite movie: The Blind Side
Favorite music: Kidz Bop because I have two-year old twins. It really gets my house jamming. I love Itsy-Bitsy Spider and Wheels on the Bus
Favorite food: Goldfish my children threw on the floor.
Guilty pleasure: The Bachelor
Favorite way to spend free time: Enjoying my children