All In For Ethan to raise funds for GAN research
RBHS student suffers from rare disease, family works to raise awareness
February 22, 2018
All In For Ethan is a fundraiser being held on Saturday, February 24, at Gibson Bar & Steakhouse. This is the fifth annual event, and the proceeds go towards a fund for Ethan Tkalec and others with Giant Axonal Neuropathy.
“Ethan’s parents wanted to build something to help out other people [with GAN]. There’s not a lot of funding for this or a lot of awareness for it so they just wanted to help raise awareness and help somehow,” said Jake Garvey, a close friend of Ethan’s.
Giant Axonal Neuropathy is a rare recessive neurologic disease that is very rare. Some things that GAN causes are a lack of some neurological responses, difficulty walking, and weakness of muscles.
“It is so rare so they [Ethan’s parents] wanted to help do something because there wasn’t much being done about it before,” said Garvey.
There are only about 50 families know to have been affected by GAN. Because of how rare the disease is, it is underdiagnosed and has very little awareness.
“The funding will go towards research and to help other kids they know [with GAN], to enhance their quality of life,” said Garvey.
There is also a fundraiser within Riverside Brookfield High School selling bracelets organized by Mari Mortensen, Nicolette Anderson, and Jake Garvey.
Garvey has a special relationship with Ethan. They started as friends and through Best Buddies their relationship has grown.
“I met Ethan the first day of school this year and a few weeks later I told Ms. Mortensen that I wanted to be his best buddy… He’s kind of just like my third brother,” said Garvey.
Garvey and Tkalec hang out with each other at school during PE and outside of school during the week. They enjoy playing wiffle ball and racing around the track.
“Sometimes we just talk… we joke around with each other and we have our own inside jokes and everything,” said Garvey. “The other thing that’s nice is that we have the same sense of humor.”