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We are pleased to announce the transition of leadership for our Fundraising Committee. Our outgoing chair, Kara Dort, has accepted the role of Board Treasurer after successfully leading the fundraising committee and campaign to exceed our goal.

Take a moment and meet Sam, our new Fundraising Committee Chair. Get to know Sam and read why she decided to join us below!

My name is Samantha (Sam) Burgeson, and I live in Chicago, Illinois with my fiancé, Jon. Our extended families are very close with each other, and I’m extremely lucky to also live so close to my three-year-old nephew, Jake Taggart, who was diagnosed with TANGO2 in May 2020.

Jake is a happy boy with a great sense of humor and the special ability to connect with people everywhere we go. He’s a very social little guy with a wide smile and eyes that radiate love. Although his frequent illnesses and “episodes” with atoxia symptoms like extreme fatigue, loss of muscle control and coordination, loss of balance, and eventual regression in his developmental abilities were scary and heartbreaking to standby with uncertainty, we’re very grateful to have learned Jake’s diagnosis at an earlier age, and have the TANGO2 community to learn from and support life-saving efforts and research. We’re so happy to see Jake begin to develop into his three-year-old self – Our family has looked on in adoration these last eight months as Jake has relearned to stand supported, walk, use signs to communicate, run (!) and he’s even willing to attempt to scoot around the neighborhood with his older sister and neighborhood friends! Although the prognosis for TANGO2 is uncertain, we’re incredibly thrilled to watch Jake experience and love life – He has brought so much sweetness to our lives and continues to teach us about unconditional love.

I’m appreciative to have the opportunity to get involved with a great community of caring and resilient individuals who make up the TANGO2 Research Foundation. It’s our mission to improve the lives of Jake and other children like him affected by this ultra-rare genetic disease – I can’t wait to see what we’re able to accomplish together!