North Jersey Based Cancer Advocacy Organization Hopes to Bring Awareness to GIST

The Life Raft Group, a leading gastrointestinal stromal tumors (GIST) advocacy organization based in Wayne, held “Life Fest 2014” in Teaneck Nov. 7, where they transformed more than 100,000 origami boats into a 3-D nautical experience after launching an education program that used the paper boats as a way to raise awareness for GIST.

Cancer survivors and supporters from across the U.S. to as far away as Mumbai, Venezuela, Mexico and Brazil, worked together and contributed more than 100,000 origami boats to show people with GIST that they are not alone - others are in the same boat.

“We wanted something that people could do,” Life Raft’s Marketing and Communications Director Erin Kristoff said.

At first, the group was eager to break a Guinness World Record for the most origami boats but Kristoff quickly realized “it wasn’t about them, it was about us.”

The Life Raft Group is a non-profit organization that has a simple focus: to cure a form of cancer known as GIST and to help those living with it until then. To do this, The Life Raft Group focuses on three key areas: research, patient support and education, and advocacy.

Since its inception in the early 2000’s, the group has held numerous events to bring awareness to the rare disease.

“The more awareness we can create for GIST, the more programs and research we can provide and the closer we can get to a cure for this often misdiagnosed disease,” said Norman Scherzer, Executive Director of the Life Raft Group.

GIST is a rare cancer of the gastrointestinal tract, which belongs to the general class of cancers called sarcomas. Sarcomas are a group of rare cancers that occur in certain tissues, such as bone or muscle. In the United States, approximately 5,000 new cases of GIST are diagnosed each year. Approximately 75-90 percent of GIST are limited to a single site at the time of diagnosis, and about 10-25 percent are metastatic (meaning the disease has spread to other parts of the body) at the time of diagnosis.

And as 13-year-old Bella Rocco knows, not many people know of GIST.

Bella was diagnosed with GIST when she was just 7-years-old and was eager to find ”an idea of what it [was].” That’s when she found The Life Raft Group.

“Everyone [at the Life Raft Group] is really dedicated,” Rocco said. “The want to find a cure.”

For Rocco, a Parsippany native, she hopes GIST will become well known in the future so that more donations will be made and a cure will be possible.

Rocco attended the Life Fest 2014 event, where the origami display took 14 hours to set up.

“I just got so proud,” Kristoff said. “After all this time it felt so good.”

For the future, Kristoff says the organization would like to put themselves out of business by finding a cure and raising awareness.

As for Rocco, who’s been in remission since age 9, she hopes to either be a doctor or a makeup artist in the future.

To learn more about The Life Raft Group, visit www.LifeRaftGroup.org.