Faces of Gene Therapy: Meet Nate Plasman

Nate Plasman is a Duchenne Muscular Dystrophy (DMD) parent advocate, a devoted husband to his wife of 20 years, Sara, and a proud father of three. In 2016, at the age of two, Nate’s son Andrew was diagnosed with DMD, which causes muscles to get weaker over time. Nine months later, Andrew was chosen for a clinical trial and would either receive gene therapy during week one, or week 49 of the study. Within just a few weeks of participating in the study, the Plasman family saw improvements.

Now, Nate has embraced the opportunity to share his family’s story and the tremendous urgency to ensure that policy continues to advance along with the rapidly progressing science. This month, CMS is expected to make a decision on whether certain conditions like DMD will be added to the federal newborn screening panel – a policy milestone that could help ensure children have access to treatment options like the gene therapy Andrew received as early as possible. We spoke with Nate following a recent panel discussion on Capitol Hill.   

Q: How did you come into the advocacy space? 

Nate: When my son Andrew became the seventh boy in the world to receive gene therapy for DMD, we felt like we needed to share how incredible the science of gene therapy is and give an example of how significantly gene therapies can change lives.

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

Nate: If Andrew had been born a few years earlier, the doctors would have told us that there was nothing to be done. Now, there is significant promise that gene therapy holds in treating young boys with DMD, allowing them to live longer, fuller lives. We need to continue to push forward.

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

Nate: Time is muscle! It is absolutely imperative that our policies keep pace with the constantly evolving science and there needs to be more of a focus on gene therapy on Capitol Hill. Where focus is placed, attention is gained, and gene therapy not only deserves – but demands – attention to continue to progress. Policymakers, researchers, manufacturers, and all others in this space need to come together to ensure patients and their families can access these treatments. 

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

Nate: Precision genetic medicine is the future of healthcare! Plain and simple. IGT is helping to ensure more families like ours have a fighting chance.  

Nate’s advocacy journey emphasizes the commitment and passion of the IGT community – his family’s story provides a glimpse of what is possible when there is access to lifesaving gene therapies. Together, we can push for this momentum to keep building and continue meaningful conversation on the expansive value of gene therapy. 

With CMS poised to issue a decision on newborn screening in the coming weeks, now is a critical moment to ensure policies reflect both the science and the urgent needs of families waiting for answers.