Virtual 'Shine a Light NF Walk' scheduled for Sept. 12

On Sept. 12, Team Mariah will gather for a virtual rally at 10 a.m. to kick off the Shine a Light NF Walk in Virginia, the signature fundraising event of the Children’s Tumor Foundation.

Team Mariah joins the NF community from Chester, Va. to bring neurofibromatosis (NF) out of the shadows and raise critical funds for research. CTF is a leader in the fight against this genetic disorder that causes tumors to grow on nerves throughout the body and affects 1 in every 3,000 people of all populations.

Kerri O’Brien, WRIC Channel 8 News Investigator, will make a special appearance at the virtual celebration. Following the virtual event, patients, families, and teams will go for a walk in their neighborhoods.

Mariah’s friends and family make up Team Mariah, who walk and fundraise in her honor. Mariah and her mother, Teresa Williams, have been attending the walk since 2014, and Teresa is the volunteer organizer of the Walk event.

Mariah, now 14, has faced numerous surgeries on her plexiform neurofibroma that has grown substantially from her cheek to her upper and lower gums, causing a variety of life-altering complications and health issues. She also has stage-two kidney disease due to an aneurysm inside of her kidney. Mariah has fought high blood pressure, learning disabilities, anxiety and depression, all stemming from her NF diagnosis, as well as additional stresses and uncertainty during the pandemic.

While the FDA just approved the first-ever treatment for inoperable plexiform neurofibromas, there is no cure at this time for NF.  Clinicians and scientists are optimistic that with funding for further research, more treatment options can be developed to improve the lives of the 2.5 million people living with NF.  Events like the Shine a Light NF Walk, which has raised more than $225,000 in Virginia, are instrumental in supporting these advances.

"In the midst of Covid-19, NF hasn't gone anywhere," says Teresa, "and it is important to remind ourselves and our supporters that we still need their help in funding important research. We worked hard to put together an amazing Walk day celebration, and I am excited for our virtual Walk day and to celebrate our NF Heroes. "

For details and registration, visit shinealightwalk.org/virginia2020.