Solving the Challenge of a Lifetime
When Amber Freed (MACC ā04) graduated from Daniels College of Business at æģ»īapp, she knew her education had prepared her for an exciting career in finance. What she didnāt expect was how well it would prepare her for her lifeās work: fighting for her sonās life.
In 2018, Amber and her husband, Mark, had noticed that their son, Maxwell, was not achieving the same milestones as his twin sister, Riley. He didnāt reach for toys or use his hands to grasp. After extensive genetic testing, the Denver couple received news of their 16-month-old sonās diagnosis: SLC6A1. So rare that it doesnāt have a name and is referred to by the affected gene, the disease causes developmental delay and the onset of debilitating epilepsy by age 3 or 4, as Amber describes. Time was of the essence ā Maxwell needed treatment before that stage to prevent irreversible neurological damage.
The problem was that no treatment for SLC6A1 yet existed. Amber decided to help create it.
Amber was working as an equity analyst at Janus Henderson Investors at the time of her sonās diagnosis, and she quit her job the day she heard the news. She would dedicate her energy full time to finding the solution āĢżgene replacement therapy āĢżfor Maxwell and other children with SLC6A1. Since that time, she says she has devoted 80 hours per week to networking with scientists, physicians, and pharmaceutical companies, in addition to caring for her twin children and providing multiple therapies for Maxwell.
Solving big social issues, Amber says, is a skill she learned during her time at the æģ»īapp. A member of the Pioneer Leadership Program, she was drawn to æģ»īapp because of its high values and mission, as well as the way the University pulls students together. She came from a life of poverty in Pueblo āĢżabout two hours south of Denver ā with little parental support. She knew education was the key to making a better life for herself.
At æģ»īapp, Amber found a community of people who would take her under their wing and help her manage lifeās challenges and solve problems along her educational journey. She emerged from æģ»īapp with an understanding that the way to change the world is by solving a huge societal issue. She says finding a cure for Maxwell āĢżand others affected by the same genetic disease āĢżis the most consequential challenge of her life.
āThroughout my education at æģ»īapp, in addition to my major, æģ»īapp supplied me with the tools to teach me how to think and how to solve a problem by bringing key stakeholders together, while using the highest moral integrity to do so,ā Amber says. āEven though accounting was my major, with Maxwellās diagnosis I was forced to become an expert in microbiology overnight. The holistic æģ»īapp experience is what separates æģ»īapp from everyone else. This isnāt a path that I would have expected, but æģ»īapp prepared me to do it.ā
Working with Dr. Steven Gray at the University of Texas Southwestern Medical Center in Dallas, Amber says she is about to set the record for fastest time from newly discovered disease to curative treatment. She is in the process of raising $4 million to fund the research and clinical trials for SLC6A1.
This treatment is Maxwellās only chance at life, and in her advocacy, Amber feels she is speaking for all the children with SLC6A1 who donāt have a voice. The treatment itself, she says, is once and done: a two-hour process that uses a harmless virus to replace the faulty DNA in the childās body. āIt sounds like science fiction,ā Amber says, ābut itās possible today.ā
The impact for the disease itself will have an effect far beyond her family, Amber says. She and Dr. Gray envision SLC6A1 being a part of a newborn screening panel: babies will be screened and treated before they leave the hospital. Since itās a single treatment that changes the DNA and solves the issue, those babies will never get sick from the disease. Additionally, the treatment approaches of other diseases affected by the same gene would benefit greatly from Dr. Grayās work.
āMy dream is for there to never be another child with SLC6A1,ā Amber says. āI donāt want any other family to go through what we are going through.ā
To the æģ»īapp community, Amber has one message: Thank you.
āThis is every parentās worst nightmare, and the only way to solve it is through collective effort of knowledge, resources, and kindness. Iāve been blown away by æģ»īapp. Iām so proud to be an alum,ā she says.
In 2012, Amber was highlighted in the book āShortcut to Prosperityā as an example of grit. She says a great deal of her grit came from her æģ»īapp experience. Because of her æģ»īapp education, Amber says, āsomething nearly miraculous is coming from a person who really didnāt have a chance at life.ā
Her æģ»īapp network continues to join her in the journey. Amberās first call for volunteers was on a Pioneer Leadership Program Facebook group. Undergraduate student Brandon Prentice was the first to step forward, offering to use his biology background to help in any way he could. Now he has a role within Amberās organization and is a contributingĢżauthor on a research paper āĢża tremendous accomplishment for an undergraduate student. Brandon is about to start medical school at Oakland University William Beaumont, and he has a new vision for his career: curing rare diseases.
āAs the director of research for SLC6A1 Connect, I partnered with Amber as she began developing a cure for SLC6A1-related disorders,ā says Prentice. āThough Amber was already well positioned to undertake such a daunting task, I served as her scientific tour guide as she entered the complex world of medicine. I provided briefings on research articles, defined laboratory tools like recombinant DNA, and acted as a sounding board as she chose what to do next. I am beyond grateful that I had the opportunity to further develop these skills and am even more grateful for the time observing Amberās strengths. She has advocated for those who are suffering, she has displayed compassion, she has overcome setbacks, and she has provided direction for the medical community. Amber is impressive, and I hope to emulate that same vigor as a future physician.āĢżĢż
Amberās fellow accounting major Nat Borchers āĢżof Colorado Rapids and Portland Timbers soccer fame āĢżreached out to his network and obtained signed sports memorabilia for Amberās silent auction. æģ»īappās head basketball coach, Rodney Billups, is participating in Amberās upcoming fundraising golf tournament. Those are just a few of her æģ»īapp connections helping her to solve the problem of a lifetime.
Amberās mission āĢżher tireless work to solve SLC6A1 for Maxwell and other children āĢżis one of hope and progress. Her æģ»īapp education and her æģ»īapp network are joining her every step of the way.
To learn more and to follow the journey of Amber and her family, visitĢż.