An August 5, Brooksville golf tournament promises to raise funds and awareness for kids battling a rare neurological disorder. In 2018, Spring Hill’s Jeff and Katis D’Angelo discovered that their then four-year-old son, Jeff Jr., was afflicted by this disease, known as CHAMP1; a disorder that delayed his capability to cry, talk, walk and suck his thumb.
“He kept missing his milestones,” said Jeff D’Angelo, in a 2022 interview with The Hernando Sun. “We had a son with a life-altering disability. It impacts every part of our lives.”
CHAMP1, or Chromosome Alignment- Maintaining Phosphoprotein, is a rare genetic disease discovered in 2015; one located on chromosome 13 and critical in cell division. The mutation of the CHAMP1 gene, called Haploinsufficiency, causes a loss of function and reduction in the CHAMP1 protein below the 50% necessary for proper neurological function and development.
Determined to discover answers and information regarding their son’s condition, they joined a Facebook group for CHAMP1 families and contacted researchers across the globe. Only to discover no viable cure or treatment options for this troubling condition, and very little information available.
Ultimately, the family came into contact with two scientists involved in CHAMP1 research and, on May 15, 2018, founded the CHAMP1 Research Foundation “with the goal of finding a treatment and cure for children affected with CHAMP1 mutations.” On December 20 of that year, the association received its 501(c)(3) nonprofit status.
“We founded the foundation and the organization website, to help our child and all of these children lead fuller, better lives,” said D’Angelo.
To support the organization, its mission, and all kids living with CHAMP1, the foundation conceptualized a charity golf tournament to raise the funds needed to develop treatments and cures for this disorder. On Saturday, Aug. 5, the Third Annual Drive For CHAMP1ONS Golf Classic will be played at the Hernando Oaks Golf and Country Club, located at 5230 Delacroix Drive in Brooksville.
“Last year was the most we have ever raised in a single event, just over 30k! All the money was used to advance research for treatments,” said Jeff D’Angelo Sr. “In this event it’s going towards a gene therapy project at the Children’s Hospital of Philadelphia.”
The Third Annual Drive for CHAMP1ONS Golf Tournament is now open for registration, at a cost of $100 for a solo player or $400 for a foursome. This fun event, set to kick off with a 9 am shotgun start, will include raffles with prizes; on course contests that include a hot-shot golf cannon, Beat the Pro, Closest to the Pin and the Longest Drive. Breakfast and lunch will be included.
“Chick-fil-A and Starbucks will be providing breakfast. Pizza Villa and Texas Roadhouse will supply lunch,” said D’Angelo. “Raffle prizes will include gift cards and baskets from businesses and organizations, plus golf items and coffee items.”
And it’s all for the sake of kids like Jeff Jr., who is now walking and talking.
“My son is currently healthy but we monitor a lot through different specialists regularly,” said D’Angelo. “We have 150 kids globally, some have cancer, seizures, severe autism, so we are fueling research with the goal of improving life and treating the problem at the genetic level.”
For more information about the Third Annual Drive For CHAMP1ONS Golf Classic, contact Jeff D’Angelo for more information or questions at 813-600-7950 or [email protected].
“When you are this small of a community you truly are the under dogs scratching for every bit of research, funding and attention,” said D’Angelo. “This is truly a grassroots effort, it’s a few families and relatives championing a cause for a small but overlooked group of kids. Our hope rests in people being a voice for these voice-less kids and making a difference by supporting the efforts.”
To watch JJ’s story, view the link below:
