Julianna Snow,  the 5-year-old little girl who made headlines around the world for choosing heaven over the hospital, has inspired a new campaign to find a cure for the devastating disease that claimed her life in June.

By Nicole Weisensee Egan
Updated October 05, 2016 02:27 PM
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Charles Gullung

Julianna Snow, the 5-year-old little girl who made headlines around the world for choosing heaven over the hospital, has inspired a new campaign to find a cure for the devastating disease that claimed her life in June.

The Charcot-Marie-Tooth Association this week launched Stand to End CMT where people can make donations and get involved with the campaign as ambassadors. The goal is to find a treatment and a cure for CMT. Julianna had a rare, aggressive form of the disease, which slowly took away her ability to walk, eat or even breathe on her own.

“We are asking participants to submit photos and video after “giving us a 5″, and the photos have started to roll in already,” Patrick Livney, president of the CMT Association, tells PEOPLE. “We are currently seeking partnerships with corporations to help spread the word through video and additional tools. In the spring we will roll out tea parties in Julianna’s honor. Our goal is to have the world’s largest tea party to raise awareness and funds. This will help us fund research for a treatment and ultimately a cure.”

The new campaign has the backing of Julianna’s family.

“Julianna would have loved this,” her mother, Michelle Moon, tells PEOPLE. “She knew exactly what CMT was and she knew what it took from her. She never complained but she knew. She knew that CMT was a bad guy, and she would be happy and proud to lead the fight.”

Last year Moon and Julianna had a series of extraordinary conversations about what the little girl wanted to do should she get sick again.

Moon first shared those conversations on the website ‘The Mighty’ with an essay entitled, “My Daughter Wants to Choose Heaven Over the Hospital” then with CNN.com last fall, unwittingly stirring up an international controversy over what say a child should have in end-of-life decisions.

Moon also started a blog about Julianna, who died in June in her pink and purple princess bedroom in her Washougal, Washington home.

Moon, a neurologist, is determined to help find a cure for the disease that claimed her daughter’s life. Her husband, Steve Snow, has a more common form of CMT, which has mild symptoms and wasn’t even diagnosed until they tried to figure out what was wrong with Julianna.

“CMT is pretty common but it’s unknown, underfunded, underestimated, under recognized,” she says. “It killed our daughter so I will never stop fighting for it… If something can come out of our loss—one of the things I hope for is a breakthrough for CMT.”