Pediatric Brain Tumor Foundation
Working to eliminate the challenges
of childhood brain tumors
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June 2014


PBTF’s scientific meeting brings together field’s top minds


Researchers from 17 institutions participated in the PBTF’s “Translating Discoveries to Cure the Kids” meeting.

 

Nearly 40 of the world’s top pediatric brain tumor researchers, representing 17 institutions, gathered in San Antonio last month for the PBTF’s inaugural scientific conference.

The “Translating Discoveries to Cure the Kids” meeting is all about building partnerships to cure the kids. The conference helped the PBTF to evaluate research priorities and determine where the field of pediatric brain tumor research is headed. It also served as a time for researchers to discuss future projects and collaborations.

“The PBTF recognizes that science must be effectively and broadly communicated for it to have maximum impact,” said Dr. Joanne Salcido, vice president of research and family support. “That’s one of the main reasons we eagerly engaged a group of premier researchers from centers across the U.S. and Canada in a think tank-like setting to critically evaluate the pediatric brain tumor research landscape. Participants covered a lot of ground together.”

Attendees spent the day identifying successful research, exploring new territories, strategizing improvements and discussing ways to maneuver around upcoming challenges.

“It’s about the hope and the promise of tomorrow,” said Elias Sayour, MD, a pediatric neuro-oncologist from University of Florida. “I have to believe there’s something better than what we’re doing.”

“The day’s program was built around a carefully crafted list of provocative questions, and the forum was a remarkable opportunity to energize and encourage the community of researchers,” Salcido said.

 


Spread awareness all year long


Help the PBTF continue to spread awareness year-round by sharing our new mission video.

 

In May, the PBTF joined others from around the world to make noise for Brain Tumor Awareness Month. On social media, we highlighted 31 individuals affected by a childhood brain tumor.

And we weren’t the only ones talking. More than 360,000 people viewed the stories of children, parents, caregivers, doctors and researchers. There were hundreds of comments made on these stories, which were shared more than 1,300 times.

Through these stories, our supporters continued to encourage and inspire each other.

PBTF Facebook friend Vanessa Abel says, “Amazing!! Thank you for sharing Nick’s story. Definitely gives many of us hope.”

Another friend, Belinda Pettitt, goes on to say, “Thanks for sharing this wonderful story. My daughter has a craniopharyngioma also and is heading in for her second resection next week. Reading stories like this always helps! What a little champion.”

After reading another story, Facebook friend Laura Elizabeth Hand says, “This is so inspiring! It may sound odd, but even though I don't know her, I'm proud of her!”

Thank you to everyone who shared their stories for the kids. You can still help us spread awareness by sharing our new mission video, encouraging others to tell their stories or participating in our events. Together, we can cure the kids!

 


Starry Night launches this fall


Sign up for an event near you today at www.mystarrynight.org.

 

The Pediatric Brain Tumor Foundation is launching an evening walk/run to help kids battling one of the deadliest forms of childhood cancer.

More than 28,000 children in the United States are living with a brain tumor. Each of the 28,000 steps in Starry Night’s 8.5K walk/run will shine light on their illness and raise funds for lifesaving medical research and life-changing family support programs.

Participants may choose to complete the two-loop 8.5K course as an individual or as part of a two-person relay team, with each team member completing one lap. Starry Night events will also include a 50-yard dash for kids, entertainment, food and plenty of fun for the whole family.

And at each evening event, participants will light the nighttime sky with thousands of lanterns to symbolize hope for a cure and honor our Stars, children with brain tumors. A portion of funds raised will support a family services program at a local children’s hospital in the 2014 host cities, Atlanta, Boston, Chicago, Houston, Los Angeles, Philadelphia and San Francisco.

Register at an event near you today!

 


3-year-old overcomes tumor


Brody O’Donnell, 3, overcame his brain tumor when the odds were stacked against him.

Nearly 13 children in the United States are diagnosed with a brain tumor every day.

Brody O’Donnell became one of those children when he was diagnosed with an atypical teratoid/rhabdoid tumor at 11 months old. Doctors gave Brody a 10 percent chance of survival. Two years later, his MRI scans are clear.

“He’s your typical little 3-year-old,” says his mom, Elizabeth. “You would never know he had a brain tumor.”

Elizabeth says her family refused to give up after the diagnosis. Brody endured seven months of treatment that included high-dose chemotherapy and 28 sessions of radiation.

Today, Brody is out of the hospital. He plays in a children’s gym and takes music classes. “We’re just enjoying life,” Elizabeth says.

“It’s important to share your story. We’re here. There are survivors.”

You can help raise awareness by telling us your story at www.curethekids.org/family-resources/share-your-story.