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What is your involvement with the TANGO2 Research Foundation?



What is your connection to TANGO2? Why did you get involved?

I have been fascinated with genetics- both the science of how we inherit genes from our parents and how these genes can impact us- ever since I first studied this subject in my high school biology class. As a college student, I became interested in working with a rare genetic disease organization to get involved in patient advocacy and learn about the experiences of those with rare genetic conditions. When I discovered the TANGO2 Research Foundation, I had never heard of TANGO2 Deficiency Disorder, which made me want to learn more about it! Gratefully, they were open to bringing a new volunteer on board, and I have been volunteering with the foundation since then.


Tell us about you!

Sophie is a recent graduate of the University of Vermont, where she majored in Biochemistry. In her free time, she enjoys running, reading, listening to music, and enjoying the outdoors.


What do you enjoy the most about being a volunteer for the TANGO2 Research Foundation?

As a volunteer with the TANGO2 Research Foundation, I work with the Research Engagement Director, Deena Chisholm, on a variety of tasks to support the foundation’s ongoing projects and functions. I would say the undertaking I have enjoyed the most is writing blog posts about the latest TANGO2 research for the TANGO2 Research Foundation’s website. I always strive to write these posts so that anyone can understand the research and its implications, even if they don’t have a scientific background. I enjoy the challenge of summarizing this research in a concise and digestible manner, and it’s really motivating to feel like I am helping TANGO2 families to learn about new and valuable findings in the field.


What is one thing you hope the TANGO2 Research Foundation will accomplish one day? (Feel free to dream big or keep it simple!)

We are currently in the middle of our Shine a Light on TANGO2 campaign, which seeks to raise funds that can be used for research, advocacy, and other efforts. I hope we reach our goal of $100,000! This would be a great accomplishment and would help us continue to support TANGO2 families.