Faces of Gene Therapy: Meet Lauren Holder

Lauren Holder is a research ambassador, advocate, and committed caregiver. After discovering she was gene-positive for Huntington’s Disease (HD), an illness that causes nerve cells in the brain to decay gradually, she has proactively used her knowledge as power to become a better, healthier version of herself. She has since participated in multiple clinical trials to support HD research and works closely with the Critical Path Institute (C-Path) as gene therapy options for HD are on the horizon. Lauren spoke with us recently about her journey as a patient advocate and why the exploration of gene therapy for HD is so necessary. 

Q: How did you come into the advocacy space? 

Lauren: I was my father’s primary caregiver and legal guardian until he passed away in January of 2021 from HD. After testing positive myself, I started as a volunteer for grassroots fundraising for research in the space. Soon after, I became a research ambassador, travelling to Washington, D.C. to speak with representatives and encourage support for the HD Parity Act. I have made it my mission to speak about the urgent need to support HD research to ensure longer, better quality lives for patients. 

Q: Why is gene therapy so important for your community specifically? 

Lauren: Other than symptomatic treatments, there is nothing to help patients and families battling this devastating disease. It’s a death sentence – guaranteeing patients will suffer without a chance for a quality of life. After watching my father and friends go through it, and beginning to experience symptoms myself, I simply will not accept that path for myself or my children.

Q: What are some of the major barriers to access you see and how can we address them? 

Lauren: There has been a bit of a shift in public interest recently. Previously, people with Huntington’s were not really a part of the rare disease community and did not have many advocates in the policy space. Only people with movements like myself - NOT cognitive and behavioral symptoms which can show up several years before movements - could participate in research. This is way too late in the disease process. We need to keep fighting for exposure and more research.

Q: Why do you believe IGT’s mission of modernizing the policy space for gene therapies is so important? 

Lauren: IGT’s mission for modernizing the policy space for gene therapies is so important because the goal is to have the best quality of life and buy time until there is a treatment available. We’re finally at the point where we can say that is on the horizon.

Lauren’s advocacy journey embodies the courage and power of advocacy for our patient community. Her experiences reaffirm the importance of continuing to strive for policy that is patient-centered and by keeping our legislature and innovation aligned.