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Jan. 31, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Mike Morris, TANGO2 Research Foundation

Posted by Laura Mullen

At the head of the herd is… Mike Morris, Co-Founder & President, TANGO2 Research Foundation

Get in touch with Mike on… Facebook and Twitter

Mike advocates for those living with… TANGO2 disorder

Mike is located in… Middletown, CT

How Mike got here… 

My son Ryan was diagnosed with TANGO2 disorder in July of 2017 at the age of 16. We searched for answers for many years but nothing definitive was found until whole exome sequencing identified TANGO2 deficiency as the root cause of his illness. The disease itself was only identified in 2015 so our decision to try genetic testing in search of an answer was timely.

How Mike’s experience has helped him…

I started a software company in 2005 that now services clients in 46 US states and Canada, with a team spread across 5 states. In many respects, the TANGO2 Research Foundation is a similar kind of start-up. It requires assembling a team and a group of people that are committed to the cause, defining short and long-term goals, managing (but taking) risks, marketing ourselves so we can be heard above the “noise” and making sure all the administrative and legal requirements are covered to operate effectively as a non-profit. 

What’s happening in 2020… 

Our plan is to move from an all-volunteer organization to one with paid professional staff in 2020. That is the next stage in our growth as an organization and a critical one as we make progress towards our goals. This will initially be an executive director who will help us formulate a more formal strategic plan around all activities, with fundraising being a priority.

The next five years… 

Our expectation is that we will steadily increase our fundraising capacity and hire more professional staff to manage the day to day operations around critical fundraising initiatives and project management. We just opened up our first round of grant offerings totaling $125,000 for 2020. We want to steadily increase both the number of grants/research projects we support as well as amount of that support. 

Mike’s outlook…

We’re early on in this journey and know that even small steps in gaining more insight into TANGO2 disease can be very impactful in a positive way to those children and young adults in our small community. We held our first international conference this past June in Houston and the passion and commitment of  the families, doctors and researchers in attendance was greatly encouraging to everyone involved. I’m very hopeful that what I’m doing, my wife is doing and the foundation is doing is going to make a meaningful difference in my son Ryan’s life and other children like him. 

Mike’s lessons for other leaders…

I think the biggest thing is don’t wait to get started on an initiative, a project or an idea until you think you “know everything.” Many of us are not experts in the rare disease space, but bring other experiences and skills to the table. It’s okay to learn as you do and the important thing is to keep pushing things forward. 

Mike’s most recently used NORD service…

We’ve used the NORD Leaders Facebook Group as a resource to ask specific questions and have found it very helpful. 

Mike’s thoughts if he found a cure…

If we, as a foundation, played a meaningful part in finding a cure for this disease, it would be the single achievement I’d be most proud of in my life. 

Mike would rather be…

Playing pick-up basketball.