Cancer Victim's Parents Helping Look for a Cure

The nationwide cancer foundation The Cure Starts Now just added its 22nd chapter, in Morris Plains. 

The foundation specializes in pediatric brain cancer research, and the Morris Plains addition was started by Amy and Joseph Stein in April.

The Steins, of Parsippany, were inspired to start the chapter after their 3-year-old daughter, Elizabeth "Bizzie" Stein, died on Jan. 15, 2011 after an eight-month battle with DIPG, a type of brain tumor.

"Bizzie" Stein was a "fiery little spirit" who loved all girly things such as princesses and ponies, according to The Cure Starts Now's site. She was strong-willed when it came to her wardrobe, as she often went to radiation treatment in pink tutus and a princess gowns. 

The Steins also have a son and another daughter, Jeffrey, 8, and Stella, 1.

Amy Stein said she and her husband first heard about The Cure Starts now within a  few months of Bizzie's May 2010 diagnosis. Stein said the family got connected with the founders of the organization and other parents of children with brain tumors. Most of the chapters are run by parents or family members of children with the cancer, she said, which inspired the Stein's to start one themselves.

The organization was founded in 2007 by the parents of a 6-year-old girl named Elena Desserich, who also died from brain cancer. According to a statement from The Cure Starts Now, the foundation has already funded more than $1 million in research, awareness, and programs in its five years. Originating in Cincinatti, OH, the charity is now in 22 states and two countries.

According to the organization, The Cure Starts Now is one of a few cancer foundations dedicated to curing all cancers. Experts say that finding a way to treat and cure pediatric brain cancer, one of the most deadly and difficult forms, could possibly lead to a cure for all cancer. 

Amy Stein said that there have been many challenges in finding a cure for brain cancer in the past several decades.

"Unfortunately for over 30 years the prognosis has remained the same; basically no one surviving, which is pretty harsh," she said.

Last year, in Parsippany raised money for the Stein family. Nearly everything in the event was dedicated to Bizzie—from the cops directing traffic with purple wands to a face-painting station. Stein said she wants to have a Bizzie Lizzie run each year, and plans on having the next one in the spring of 2013.

For some of the Morris Plains' chapter's upcoming fundraisers, Stein said she plans on holding lemonade stands this summer, similar to Alex's Lemonade Stand, another nationwide foundation dedicated to child cancer research.

"I think it's a great way to get children involved, and understanding that other kids get sick and how to help them," Stein said.

Another initiative that the foundation has done, and Stein plans to bring to Morris Plains, is the Monkey in My Chair program. A cancer patient is given a monkey that takes his or her place in school when the child is absent, and provides the child with an online tool to communicate with the classroom through pictures and documents.

The Cure Starts Now is also part of a larger group, the DIPG Collaborative, which includes 14 other child cancer research foundations.

DIPG has a gala once a year and a symposium once every two years, to bring together cancer foundations, researchers and doctors from around the world to raise money and discuss initiatives for the charities.

Stein said that she attended the last symposium in 2011, and she will also attend the next one in 2013, where they hope to raise about $700,000. 

"It's exciting and gives us that goal to raise as much as we can," she said.

Stein said the association has made progress already, after only being formed last year. According to DIPG.org, the collaborative has raised nearly $500,000 for DIPG research.

The Steins have a strong connection to DIPG, as they donated Bizzie's brain tumor for research at Stanford University; the research will be funded by the DIPG Collaborative.

"We feel very emotionally tied to all this research," Amy Stein said.

According to the Pediatric Brain Tumor Foundation, nine children in the U.S. are diagnosed with brain tumors every day, and brain tumors are the leading cause of cancer death for children with cancer. The foundation also states that "brain cancer research is underfunded and the public remains unaware of the magnitute of this disease," as this form of cancer is one of the most difficult to cure.