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Sep. 17, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect

Posted by Valaree DonFrancesco

Head of the Herd Spotlight, Amber Freed SLC6A1 Connect

At the Head of the Herd is… Amber Freed, Founder and CEO, SLC6A1 Connect.

Amber advocates for… children living with the rare neurological condition SLC6A1 and their families.

Amber is located in… Denver, Colorado.

You can follow Amber and SLC6A1 Connect… on Facebook and Twitter.

How Amber got here…

I became involved in the rare disease community when my two year-old son, Maxwell, was diagnosed with SLC6A1. I left my career in equity analysis the day he was diagnosed and dedicated my life to finding a cure.

How Amber’s previous experiences lend to her new work in rare disease…

I spent my career as an expert in research, but in a financial capacity as an equity analyst. When Maxwell was diagnosed, I took all of the research skills I had and focused them on understanding my son’s disease and, more importantly, developing a research plan to cure the disease.

What Amber hopes to see SLC6A1 Connect accomplish in the next five years…

What we’re trying to accomplish is funding the necessary translational research to develop a gene replacement therapy for SLC6A1. My hope is that our organization won’t exist in five years because there will be a cure to SLC6A1 in place. By that time, I’d like to have moved on to creating a gene replacement therapy for the next rare disease.

How SLC6A1 Connect fundraises…

We fundraise constantly. We held 84 fundraisers last year including golf tournaments, dinners, media campaigns, and more.

Amber’s Dos and Don’ts for running an effective organization…

Do be energetic and never give up hope. A lot of us are forced to be in this position. It’s not a job we ever wanted or asked for. don’t give in to the sorrow and depression. Try to focus on the future and the way things will be going forward.

How Amber remains hopeful…

I remain hopeful by staying on it and being relentless. I put all my energy into pushing for a cure to this disease – 80, 90 hours a week. I help every scientist we work with to advance their own individual projects, while also holding everyone accountable.

How NORD has supported Amber’s efforts…

NORD gave me all the tools I needed to begin my organization from the start. I was able to get a crash course in science through NORD’s conferences and was equipped with tools to build a nonprofit and community.

Where Amber developed her leadership skills…

I’ve always been very involved in the community and giving back, but I never really strove to be president of an organization or anything like that. As a mother, I had to rise to the occasion when my son was diagnosed, but it worked out for the better to form a vision and work toward that goal.

Amber’s favorite quote… “If you’re going to kill a cow, you better make a burger.” To me that means that we’re not just in this to come up with something small. We’re looking at the big picture and we’re making ourselves a burger.

When Amber finds a cure for SLC6A1 and has to find a new mission, you’ll find her…:

Helping toward a cure for another rare disease. My dream is to never have another Freed family. I don’t want another family to go through what we’ve gone through, and I would like to provide some sort of blueprint as to how I went about this and help them be able to accomplish it themselves.

The last book Amber read… The only reading I really do anymore is for research or when I’m reading my twins a goodnight book. The last book I read was probably a textbook about 2 AM or Goodnight Moon.