PBTF's Imaginary Friend Society Makes New Friends at World Summit of Brain Tumour Patient Advocates
Childhood brain tumors know no borders. At the 2017 World Summit of Brain Tumour Patient Advocates, more than 80 people from 29 countries gathered in London Oct. 20-21 to learn about the latest therapy developments and quality of life issues, as well as address challenges specifically facing the global pediatric and adult brain tumor community.
Hosted by the International Brain Tumour Alliance, the third biennial summit included representatives from nonprofits, healthcare and pharmaceutical organizations and governmental agencies across the world.
New to this year’s summit were masterclasses run by experts in their field who facilitated interactive sessions on what’s new in clinical trial design, the challenge of missing data, implementation of the Cancer Moonshot Rare Tumor Patient Engagement Network and other topics.
“As a founding member of the International Brain Tumour Alliance, it was an honor to represent the Pediatric Brain Tumor Foundation and be in the company of so many dedicated advocates from the global brain tumor community,” said Robin Boettcher, PBTF president and CEO, who presented on Saturday. “From updates on treatment options to best practices in support of patient care, this biennial world summit has tremendous value in working together, achieving progress and sustaining hope.”
Boettcher’s presentation, “Imagine What We Can Do For Kids,” focused on how the PBTF has grown its family support programs – namely the Starfolio toolkit for newly diagnosed families and the recently launched Imaginary Friend Society -- and the critical role partnerships played in the success of these programs.
Kristen Gillette, founder and executive director of The Kortney Rose Foundation, co-chaired that afternoon plenary session. Headquartered in Oceanport, N.J., The Kortney Rose Foundation’s goal is to find a balance between the best available treatments with the best quality of life. It was founded by Gillette and her husband Richard in honor of their daughter Kortney who died in 2006 after being diagnosed with an aggressive brainstem glioma. The Kortney Rose Foundation is also one of the Imaginary Friend Society’s newest distribution partners.
“I actually got tears in my eyes knowing that our daughter Kortney would’ve loved these,” remarked Gillette after the Imaginary Friend Society presentation. “The Kortney Rose Foundation is proud to spread awareness of this important video series, which ties into our mission of supporting education related to the treatment and cure of pediatric brain tumors. We applaud Imaginary Friend Society for its creativity and for enhancing the quality of life for children with this challenging diagnosis."
“It was amazing to see such excitement for the Imaginary Friend Society and Starfolio programs,” said Boettcher. “We’re looking forward to partnering with organizations in the international brain tumor community to reach more children worldwide.”