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Volunteer Spotlight – Tracey Busby

Tracey Busby says she’s inspired to fundraise for the Charge Syndrome Foundation because it has made a difference in the life of her adult son with CHARGE, as well as her own life and the life of her family.

“Throughout my son Sullivan’s life, I have accessed the various resources that the Foundation has compiled to help us navigate the education and medical system. But the biggest emotional impact for my family was finally attending our first Charge Syndrome Conference in Chicago,” Tracey says. “To find a community and people who just “get it” was emotional and uplifting. To this day, my teen daughter speaks about finally meeting her people, and not having to ever explain.”

Tracey’s fundraising runs under the banner of “Power Up! for Charge” and takes place all year. She also takes a unique approach, with the fundraising done through a virtual world on the web platform Second Life. Linden Lab, the parent company of Second Life, has given Tracey space to fundraise and build awareness about Charge Syndrome. Linden Labs also helps promote events and has been hugely supportive of the cause, Tracey says.

“Through Second Life, I am able to create a beautiful place for people to explore, relax, and have fun,” Tracey shares. “I regularly organize live music fundraisers with several excellent musicians who volunteer their time and talent. What is super exciting about this platform is the global approach, as the performers and the people who come to support “Power Up! for Charge” come from every corner of the earth. In one year, we have made thousands of people aware of Charge Syndrome and what it is.”

Tracey says she’s also fortunate to have the ongoing support of Suzen Juel, who she describes as an amazing visual artist who has become passionate about Charge Syndrome and donates her time and creativity to the project.

“This fundraising project also wouldn’t be possible without the support of a group of very dedicated individuals who tirelessly lend their time, energy, and expertise,” Tracey adds. “The growing community created by the “Power Up! for Charge” fundraising effort is phenomenal.