Children’s Tumor Foundation Hosts “Shine a Light on NF” Gala to Support Rare Disease Research

Nov 6, 2017, Posted in Fundraiser, Galas, Latest News, Press Release

 

Honorees include Freda Lewis-Hall of Pfizer, Lara S. Sullivan of SpringWorks Therapeutics,
NF Ambassadors Frankie and Olyviah Moriguchi,          
and a special tribute to the NF Patient

With Master of Ceremonies Raina Seitel, NBC Host & Correspondent

 

NEW YORK – On Thursday, November 9, 2017, prominent New York business leaders, together with friends, families and fundraisers, will gather at The Lighthouse on Pier 61 for the annual Children’s Tumor Foundation New York Gala, which this year will “Shine a Light on NF.” Funds raised will support research into neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body and affects 1 in 3,000 births of all populations. There is currently no cure.

An evening of inspiration and celebration, the Foundation will present a new honor, the Unconventional Vision Award. This award acknowledges individuals who have rejected the status quo and are having a positive impact on the lives of children and adults living with neurofibromatosis.

This year’s Unconventional Vision Award will be given to Freda Lewis-Hall, MD, Executive Vice President and Chief Medical Officer, Pfizer Inc. and Lara S. Sullivan, MD, President and Founder, SpringWorks Therapeutics. Dr. Lewis-Hall and Dr. Sullivan are upending traditional drug development with the launch of SpringWorks Therapeutics, a new Pfizer-conceived, mission-driven medicines company dedicated to developing innovative potential new treatments for underserved patient communities.

First launched in September 2017 with news of promising investigational therapies, including one for NF, SpringWorks Therapeutics represents an innovative approach to drug development with a business model designed to deliver both social and financial returns via partnerships with a variety of stakeholders, including scientists, biopharmaceutical partners, patient groups, funders and philanthropists. Freda Lewis-Hall and Lara S. Sullivan are breaking down the barriers that stand between drug development and the patient, and exemplify the qualities and leadership deserving of this honor.

Patients are at the heart of everything we do, which is why this year the Children’s Tumor Foundation (CTF) is overjoyed to honor the NF Patient at the New York Gala. CTF champions a team approach to the complex challenge of developing treatments and a cure for NF. While that includes fostering collaboration among researchers, clinicians, and scientists, it also extends to involving the patient as our partner. We learn the most from NF patients who are not only open about what life is like living with NF, but who provide their medical history to the NF Registry, their tissue samples to the BioBank, and participate as advocates in the Foundation’s research consortia, including the collaborative open-data Synodos model.  At the gala, the Foundation will recognize the challenges patients face, celebrate the triumphs they achieve, and stand united in the fight to achieve our shared vision of ending NF.

Frankie and Olyviah Moriguchi will be honored as the 2018 Children’s Tumor Foundation Ambassadors, an award bestowed upon young adults living with NF to recognize their courage living with the disorder, and their personal efforts to further the Foundation goals of research, public awareness and patient support.

Frankie’s family was once told he’d never walk, talk, or even make it to his teen years.  He just turned 22 and, despite all of the pain and discomfort, has a happy disposition and is an absolute joy to be around.  As a baby, it was discovered that Frankie had a tumor on his optic nerve that grew to erode part of his skull, which led to the removal of his eye. In 2016, Frankie had surgery to remove all the remaining eye systems, including tear ducts, his eyelids and eye lashes. He can now comfortably fit glasses on his face and no longer suffers from ongoing infections. Frankie also experiences developmental delays as a result of all of the complications from NF.

Unlike her older brother, Olyviah is less noticeably affected by NF. She has multiple café au lait spots and has had several surgeries to remove painful tumors.  She also has ADHD and receives accommodations at school due to learning disabilities resulting from NF; nonetheless, she is determined not to let NF prevent her from achieving her goal of traveling the world. Olyiviah speaks Japanese and dreams of visiting Japan.

“Every year at this time, as we gather to reflect on the progress made in NF research, it is crucial that we also honor the NF patients and their families who are counting on us to lead the way to treatment and a cure,” said Annette Bakker, PhD, Children’s Tumor Foundation President and Chief Scientific Officer. “Tonight, we spotlight the innovative work at Pfizer spearheaded by Freda Lewis-Hall, MD, and at SpringWorks Therapeutics by Lara S. Sullivan, MD; and the unstoppable spirit of Frankie and Olyviah Moriguchi, this year’s NF Ambassadors, who, like all our NF Heroes, inspire us in our mission.”

The Foundation is also fortunate to have NBC Host and Correspondent Raina Seitel serve as master of ceremonies at the New York “Shine a Light on NF” Gala.

For more information about the Children’s Tumor Foundation, please visit www.ctf.org.

To view a photo gallery from the evening, click here.

 

About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to funding and driving innovative research that will result in effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in every 3,000 births across all populations equally. There is no cure yet – but the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF. For more information, please visit www.ctf.org.

 

Contacts:
Simon Vukelj, VP, Communications, svukelj@ctf.org
Rebecca Harris, Public Relations Manager, rharris@ctf.org