At 2 years old, Port resident Josie Johnson was diagnosed with FOXG1, a rare neurological disorder caused by a mutation of the FOXG1 gene which impacts brain development and function, often characterized by seizures, inability to control body movements and lack of speech. Determined to find a cure for FOXG1 and give her daughter the best life possible, Josie’s mother Nicole Zeitzer Johnson, along with two other FOXG1 mom’s Nasha Fitter of California and Christine Revkin of Switzerland, created the FOXG1 Research Foundation in 2017.
“We got the diagnosis in 2014 and it was devastating but I thought, ‘what am I going to do about it,’” said Zeitzer Johnson. “I’m going to give her the best life possible and get a doctor for every area of her body and make sure she has everything she needs. I joined an existing foundation and it was great for parent support, but it wasn’t moving forward with research and didn’t feel able to. I got in touch with two other FOXG1 moms and we realized to make research happen, we had to take it upon ourselves.”
Today, just three years later, the FOXG1 Research Foundation has successfully funded six projects with scientists from the University of Siena, Italy, to Yale’s School of Medicine.
“What we learned while FOXG1 is rare—about 460 people in the world have it—it is one of the first genes in brain development,” explained Zeitzer Johnson. “Many scientists want to work on these projects because they think it holds the key to understanding many other brain disorders like autism, Alzheimer’s and brain cancer. A scientist at Yale found links between FOXG1 and autism, so this could impact millions of people. In my heart, I knew it needed to be bigger and needed more people to care. I’m a mom on a mission to save my daughter’s life and in order to do so,
I need to bring people in.”
In 2017, the research foundation raised $1 million, but needs $3 million in 2018 to finish phase one of their research and move forward with clinical trials.
Enter Chris Pepe, president and lead broker of Brooklyn-based Nicholas C. Pepe Corporation and a longtime friend of Zeiter Johnson and her husband, Rich, since their days in the Port Washington School District together. Pepe, who recently got back into playing music after more than 20 years, decided to help raise funds for the FOXG1 Research Foundation through a concert featuring himself along with A Second Life and Kingfisher at the Landmark on Main Street on Sunday, Aug. 26.
Pepe grew up in a musical family, watching his mother sing to the Jackson 5 while cleaning the house. At the age of 12, Pepe traded an old computer for a guitar and amp, taught himself how to play and soon began writing and performing his own music at the ages of 16 and 17. During college, Pepe joined a band, which toured in China and Japan when Pepe was just 22. After a few years together, the band broke up and Pepe explained he couldn’t find that connection anywhere else, so he went into his family business, soon finding a passion for real estate. But as Pepe grew older, he felt a void—music was missing from his life.
About 21 years later, on April 14, Pepe released an EP with five songs, Remote Viewer, a culmination of Pepe’s own musical journey with influences from Led Zeppelin, The Doors, Rolling Stones, Pearl Jam, Stone Temple Pilots, Soundgarden and the Motown sound. After releasing the album on SoundCloud, Pepe’s music got more than 150,000 plays and soon was questioned about when he would perform live.
“I used to play live all the time and do music more than anything else,” explained Pepe. “I haven’t done it in a long time and I said I would put a show together. I wanted to do it and the guys on the album wanted to do it. My friend Nicole [Zeitzer Johnson] and her husband Rich have a daughter who has FOXG1 and I’ve known them for 30 plus years. I figured I’d combine the two and create a benefit concert and any sales I would donate to the foundation. I’m so honored to do this.”
Pepe started planning the concert before even notifying Zeitzer Johnson of his idea. Once he secured the Landmark on Main Street, which seemed to be the perfect place for the Port native who now lives in Sea Cliff, Pepe called Zeitzer Johnson to let her know. After expressing her gratitude, Zeitzer Johnson told Pepe she wasn’t sure if her family would be home due to a previously planned trip, but Pepe said the concert would go on anyway. After rearranging some plans, Zeitzer Johnson, her husband and son will attend the benefit concert.
“It was so touching for so many reasons,” said Zeitzer Johnson. “We’ve known Chris forever, but it’s not like we talk all the time and we haven’t seen each other much in years. Sometimes we would run into each other and he was always an incredible person. To have a lifelong friend recognize your efforts from afar and help me with my research is amazing. The whole run up has been an incredible experience so far.”
The benefit concert begins at 6 p.m. on Aug. 26. For tickets, visit www.brownpapertickets.com/event/3439681. The Landmark on Main Street is located at 232 Main St, Port Washington. For more information about the FOXG1 Research Foundation, visit www.foxg1research.org.
