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We are delighted to feature Benjamin Mitchell in our Volunteer Spotlight for this month, as he has been an exceptional volunteer with our Foundation for the last six months and has made a significant impact. If you watched the series of YouTube videos he created for us during the holidays, you may remember him sharing his sister’s remarkable journey to diagnose TANGO2 disease. Keep reading to learn more about him!

What is your involvement with the TANGO2 Research Foundation? 

Chair of Early Diagnosis and Detection Committee

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

My discovery of TANGO2 occurred after my sister was diagnosed with the genetic disorder at the age of 27 after experiencing a metabolic crisis. I went to the TANGO2 Family Conference that summer and discovered a group of people that were just like my family. We were all looking for answers and all went through the same hardships leading up to a diagnosis–the unknowing, the myriad of medical professionals, the heart-stopping trips to the ER. I got involved with the TANGO2 Research Foundation because I wanted to save other families from these experiences and carve a more hopeful future for our community.

Can you tell us about yourself?

Howdy! I’m Benjamin, but my friends call me Benny. I’m a former Michigander scientist turned Seattle-dwelling marketeer. I work for a genomic biotech startup, volunteer at the TANGO2 Research Foundation, and help run an entrepreneur-centered life science event platform called Genome Startup Day. After work, I’m a serial hobbyist: painting, violin, photography, and language learning.

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

I enjoy connecting with the passionate members of the TANGO2 community. Parents, physicians, researchers, and caring individuals all come together with a common goal of making a better future for those impacted by this disease.

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

We will take away the anxiety of the unknown. Our research will yield answers patients, parents, and family members need to care for those impacted by TANGO2.

 

If you want to get involved in Ben’s committee or learn more about volunteering with our Foundation, send us an email at info@tango2research.org!