Kansas-based nonprofit aims to spread research on rare diseases

WICHITA, Kan. (KWCH) Patients with rare types of cancer typically don't have much information to learn from when they're seeking treatment.

Melissa White is in a world she never thought she'd be in. Her 5-year-old daughter, Adele is fighting a TRT, a rare brain cancer.

"We're hustling. We know she's so little. There's something growing in her brain, we don't want to sit around and wait," says White.

When Adele was diagnosed four years ago Doctors told them they didn't have a whole to offer.

"There's actually not a standard treatment and that was really when we began our journey into the research world because there are several trials out there for her kind of cancer, that's it."

She recently connected with Wichitan Amanda Haddock of Dragon Master Foundation.

"My son had GBM brain cancer, which is the same type of cancer that John McCain has, it's what Beau Biden died from," says Haddock.

Her son David passed away in 2012 and says his two best options were clinical trials.

They had no way of seeing whether they could be successful or not. Now, she's creating a patient portal with that information.

"We'll be able to look at patients and say 'oh, all of these patients that are doing well have the same genetic mutation. We want to put more patients like that on this clinical trial and if they don't have that mutation, we want to put them somewhere else."

Right now, 17 hospitals can input data and anyone can view the information in the portal. The foundation will soon fund a clinical trial for two children in the Wichita area with rare brain cancers.

"Putting this kind of data in the cloud means that doctors everywhere have the same access to information and can bring those treatments closer to home," says Haddock.

The Dragon Master Foundation is hosting a fundraiser to contribute to creating this patient portal. The "Cures for Christmas Village" is a free, two-weekend event set for noon to 8 p.m. Saturday (Nov. 25) and noon to 5 p.m. Sunday (Nov. 26), as well as noon to 5 p.m. Dec. 2 and Dec. 3.

"This event is designed to give Wichita-area families a magical place to create memories and raise money to cure cancer so that other families can celebrate for years to come," the Dragon Master Foundation says.

The "Cure for Christmas Village" offers planned activities and Christmas decor for sale. Admission is free, but refreshments and other treats will also be for sale.

You can find more information here: Dragon Master Foundation and more on the event at Cures for Christmas Village Facebook