In 2018, Jeff and Katis D’Angelo of Spring Hill discovered that their then 4 year old son had a rare neurological disorder called CHAMP1; A disorder that delayed his capability to cry, talk, walk and suck his thumb. “He kept missing his milestones,” said Jeff D’Angelo. CHAMP1 is an acronym that stands for Chromosome Alignment- Maintaining Phosphoprotein. CHAMP1, an extremely rare genetic disease discovered in 2015, is located on chromosome 13 and is said to be 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 (https://champ1foundation.org/champ1/faqs/).
At first they were at a loss to find valuable information about their son’s condition, they found a Facebook group where 37 families affected by the CHAMP1 mutation were connected. They began contacting researchers around the world, only to discover very little information was available and there was no viable cure or treatment options for this troubling condition.
“We had a son with a life-altering disability,” said D’Angelo. “It impacts every part of our lives.”
Determined to help their son, the family found two scientists involved in CHAMP1 research. And May 15, 2018 the CHAMP1 Research Foundation was created with the goal of finding a treatment and cure for children affected with CHAMP1 mutations.” On December 20, the association received its 501(c)(3) nonprofit status.”To date, only 100 kids have been diagnosed with CHAMP1,” said D’Angelo. “We founded the Foundation and the organization website to help our child and all of these children lead fuller, better lives.”
In support of this organization and its mission, The CHAMP1 Research Foundation will host the Champ1 Research Foundation Golf Tournament to Benefit Research for Childhood Disorders from 8 am to 5 pm on Saturday, June 4 at the Hernando Oaks Golf and Country Club, 5230 Delacroix Drive in Brooksville. The first annual tournament garnered $30,000 for this cause. “All funds are used directly for the purpose of finding treatments and ultimately a cure,” read an event notice.
Breakfast and lunch are included, and guests can take pictures with the Tampa Bay Buccaneers alumni cheerleaders. The tournament itself will feature the pro challenge, longest drive, and closest to the pin challenge. Guests can also use the hotshot golf cannon to drive the green on a par 4. Inexpensive alcoholic beverages will be available at this event, which will feature a silent auction, 50/50 and chances to win prizes and free rounds of golf at prime courses throughout the state of Florida. “Have a great time while contributing to an important cause,” said D’Angelo.
Registration for the golf tournament is $80 per person and $320 per foursome. To register, visit champ1foundation.org/product/golf. Sponsors and partners are needed and welcome, contact Jeff D’Angelo for more information or questions at 813-600-7950.
Thanks to his parents’ dedication, physician assistance and his own strong will, Jeff Jr. is now walking and talking. “He may not walk and talk as much as other kids his age, but he does it his way,” Jeff D’Angelo Sr. said. “All my wife and I want is for him to have the best life possible.”
