CharlieFest: A grandpa's fundraiser for little Charlotte

Julie R. Johnson, Corning Observer, Calif.
·3 min read

Feb. 27—Mark Monroe will go to any lengths within his ability to help his granddaughter, Charlotte, who is one of very few children worldwide diagnosed with the incredibly rare disease, Ring 14.

Putting that devotion and love into action, Monroe, who lives in Corning with his wife, Cindy, has organized a fundraiser, CharlieFest, at Rodgers Theatre at 2 p.m. on March 9 to help bring attention to his granddaughter's fight for life, and raise the finances needed to fund that battle.

When the idea of holding a fundraiser came about for Monroe, it was an easy decision to blend two of his loves — music and Charlotte, who is 10-months-old and better known by her nickname, Charlie.

"The concept for the fundraiser was initiated by my father," said Charlie's father, Anthony Monroe, the son of Mark and Cindy. "Drawing upon his musical connections, and with the help of my sister, Samantha, the event is a collaborative effort by our community to support Charlie, our family, and raise awareness of her condition and rare disease."

Anthony Monroe grew up in Corning and graduated from Corning High School. Married to Siobhan Monroe, the couple learned of their daughter's disease when she was six months old.

"Ring 14 Chromosome disorder is an extremely rare disease affecting about 250 people worldwide," Anthony said. "The disease is moderately to severely disabling, and it already nearly killed Charlie in October 2023 at six months of age. Our personal journey has underscored the vital need for advanced research and education in rare diseases to better understand and manage conditions like Ring 14 Chromosome."

The funds raised through CharlieFest will go towards Anthony Monroe's schooling to earn a Masters Degree in Human Genetics and Genomics, and to the Ring 14 USA Foundation.

Anthony is a physical and cybersecurity expert for a consulting company. The couple currently lives in Paradise, but will soon be moving to North Carolina where Charlie can get the best medical care for her disease. He is also now a student pursuing a masters degree in Human Genetics and Genomics to specialize in rare diseases such as Ring 14. Siobhan is studying to become a registered nurse.

"We are fundraising to raise awareness and education on Ring 14 Syndrome," Anthony said. "Pursuing a master's (degree) in Human Genetics and Genomics is not just a personal goal; it's a step towards gaining the expertise needed to make a tangible difference in what feels like a helpless position and in the field of rare disease research and advocacy."

CharlieFest is a benefit concert featuring such artists as Mumblefinger, who volunteered to headline the event, 32 West, Brocken Spectre, EarthShine, Dane Barbo, The Tehama Sound, and more.

"The entire community started buying tickets and sending care packages and sharing the event," Anthony added. "We really can't believe the support from family and our community. My brother and sister-in-law have a raffle ongoing for their AirBnB, and the town is letting us stick up some booths and a bake sale out front, along with a 50/50 opportunity drawing, an item opportunity drawing, and more activities."

Monroe's long-time friend, Sean Wilson, donated two electric guitars to the event from his store in Red Bluff.

CharlieFest tickets are $30 each and can be purchased at the door or through Venmo at Anthony Monroe 6, or call 530-838-8338.

"There are many rare diseases out there, and likely many more undiscovered individuals with rare diseases like Ring 14 Chromosome Syndrome, so how can we raise awareness, not just for Ring 14 but also other orphan diseases, and bridge gaps for families, researchers, and find the ideal synthesis in rare disease research efforts among many groups? Raising awareness is just the beginning; through education and research, we can hope to better understand and support individuals affected by rare diseases like Ring 14 Chromosome Syndrome and others," said Anthony Monroe.