Fundraising goes virtual for rare disease

"Pampered Chef cares about making things easier for families," said Erin Stuckey, the party consultant for the Pampered Chef Fundraiser. The company makes quality kitchen products and now hosts parties online. "They want to get people around the table preparing food together."

Stuckey is donating her full commission to NF2 Biosolutions Her introduction to NF2, an incurable condition that causes tumors to grow in the nervous system, robbing the patient of sight, hearing, balance, and eventually mobility, came when a woman whose NF2 caused her to become deaf, wanted to host a party. To help, Stuckey switched their video provider to YouTube which provides closed captioning. When Stuckey was looking for a charity to support with her Pampered Chef parties, the party host she'd helped suggested NBS.

"I said yes the minute I heard what a great organization it is — and that the founder's son suffers from the disease," said Stuckey. "The only therapies available to treat NF2 are surgery and radiation, which are sometimes more damaging," said Dr. Nicole Henwood, CEO of NBS explaining why she founded the non-profit in 2018 after her then six-year-old son AJ was diagnosed with NF2.

"No organization existed just for NF2," said Henwood. NBS was founded by parents and families of NF2 patients with the vision of funding the research and development of novel therapy initiatives, like new cutting-edge gene therapies. "We are dedicated to stopping or slowing down these tumors."

The $1.2 million raised has funded work at three different labs, but like almost every other 2020 initiative, COVID-19 has slowed their work. The labs were forced to close for three to six months and are now dealing with staffing and supply constraints due to the coronavirus. Like many non-profits, fundraising also dipped in 2020 when planned in-person events had to be canceled. In areas where the pandemic spiked, patients have had to delay or forgo treatment.

Still, progress is being made. NBS launched the first open-access NF2 Tissue and Cell bank to provide researchers with needed tissue samples. NBS collaborates with the Children's Brain Tumor Tissue Consortium whose operation center is at the Children's Hospital of Philadelphia.

"This is a race against the clock. Usually, major problems don't show up until the late teens or early twenties," said Henwood. While her days are spent working as an anesthesiologist, her wee hours of the morning are dedicated to NBS.  NBS relies on volunteers like Henwood to run its day-to-day operations in order to fund as much research as quickly as possible. "I know we'll find an answer; I just hope it will be in enough time to help AJ."

Click the link to participate in the NBS' Pampered Chef fundraiser before Nov. 16 or learn more at nf2biosolutions.org.

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About Karen Myers

Karen Myers lives in Pocopson Township and has written for several local publications. A strong supporter of our community, Karen has served on several non-profit boards, such as Pocopson Elementary PTO, The United Way of Southern Chester County, Chester County Art Association and Tick Tock Early Learning Center. She received her M.B.A. from the University of Delaware and worked in marketing and operations with a focus on banking.

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