$8K Raised; Tri-Valley Event To Benefit Rare Disorder Research

Livermore CA

20 September, 2021

4:37 PM

Description

TRI-VALLEY, CA — When Pleasanton resident Megan Lampman's daughter Jolene was born, she said it was clear that something was off. At 4 months old, her family learned that Jolene was diagnosed with neurofibromatosis, a rare genetic disorder known as NF that affects 1 in every 3,000 people and causes tumors to grow on nerves, the Children's Tumor Foundation said in a statement. Doctors said Jolene would not live past her teenage years. A treatment for NF was recently by the U.S. Food and Drug Administration but there's no cure for NF. Not yet, at least. In hopes to change that, Jolene, now a spunky 6-year-old, and her family — Team Go for Jo — with gather alongside families from across the region 10 a.m. Oct. 9 at Dublin's Emerald Glen Park for the Shine a Light NF Walk Bay Area fundraiser, the foundation said. Proceeds will benefit NF research. Jolene "gets confused why we want to 'End NF' if NF is part of her," Lampan said in the statement. "But what we really want to end is her struggle. The constant trips to doctors, the regular 'scanxiety' with each MRI, the strain of knowing this condition is progressive. Currently, she is dealing with more of the social issues of looking different as well as some of the learning issues that are common with NF." Nearly $8,000 has been raised as of Monday afternoon. The public is invited to attend the event in-person or online. Registration is required for the Shine a Light NF Walk. Donate here.