Wilcox Energy rallies for local girl with rare disease, CDKL5, for Team Avery
But something else happened after their plates had been cleared under the bright, sunny skies, something that began with an idea a year before.
Julie Valvo, marketing director at Wilcox, had seen propane trucks of other fuel companies painted bright pink to promote breast-cancer awareness.
Wilcox Energy, though, is a decidedly local company, staffed by local employees, and serving a radius of 20 miles from its Westbrook headquarters. Foster had mentioned he wanted to do something to give back to the community.
So, as any astute marketing director of a local company would do, Valvo narrowed her lens.
She knew Mark Leopoldino, the manager of Bill’s, the iconic seafood restaurant, where she and her co-workers would be lunching a year later. She knew his young daughter Avery suffered from CDKL5, a rare and devastating genetic disorder that has stolen her ability to walk, talk, and use her hands; that subjects her to seizures that daily and nightly tear through her brain; and requires her parents to sleep four feet from her bed.
The members of Team Avery knew, as did Valvo, that a disease so rare that it afflicts only 400 girls worldwide — so rare that it has yet to be commonly identified by a proper name — has little chance of getting research funding, shifting the burden to families already overwhelmed with the 24-hour care it requires.
Thus sprung the idea that led to Wilcox Energy’s Propane Division’s pledge beginning last spring to donate, for each gallon of propane they sold, a penny to Team Avery — “a penny of hope in every gallon,” as Valvo put it. So far they’ve raised $1,452.24.
It also offered something more, emblazoning a picture of 5-year-old Avery Leopoldino on each side of its propane trucks that daily motor through the streets of Westbrook, Guilford, Chester, East Lyme, and Deep River, among other towns.“Every time anyone sees Avery’s picture on one of our trucks, every time they see the name of her disease, that’s one more person who’s aware not just that it exists, but that someone in our community, a little girl, is fighting it,” said Foster. “Whether you use propane or not, we hope that makes a difference.”
So it was that Foster, along with Valvo and the rest of his staff, having finished their clam strips and lobster roll, presented a check to Leopoldino to benefit Team Avery, together with a promise to extend its campaign through 2014.
Giving back on Secretaries Day, in more ways than one.
Visit www.CDKL5.com for more information about the disease and wilcox-energy.com/team-avery for information about Wilcox Propane’s Team Avery Campaign. Donations for the awareness and research of CDKL5 should be made payable to MCCF Avery’s Fund and mailed to Middlesex County Community Foundation, 211 South Main St., Middletown, CT 06457.
Meet Avery Rose Leopoldino. Avery is 4 years old, she lives in Old Saybrook, and she suffers from a rare genetic mutation called CDKL5. Wilcox Energy’s Propane Division is proud to announce our partnership with Team Avery to raise funds and awareness for this devastating disease. Starting April 1st & for the entire year, we will donate a penny for every gallon of propane we sell. 100% off all donations fund research for CDKL5. Whether you use propane or not, you can help us fight this horrible disease.
When Avery was born on April 09, 2008, she seemed just like any other healthy baby girl. Her family soon learned, however, that Avery was born with a very rare genetic mutation called CDKL5. There is currently very little knowledge and funding in regard to understanding her disease and improving her quality of life. Avery suffers from daily seizures. She is profoundly impaired in all areas of her cognitive and motor development. She may never learn to walk or talk, and has potential for some serious gastrointestinal problems as well. Avery also suffers from a cortical visual impairment. Avery requires 24/7 supervision in her daily life as her seizures can happen any time throughout her day.
“Team Avery” has rallied together to provide a sense of hope for a cure. The surrounding communities of Old Saybrook, Westbrook, Bill’s Seafood, Haddam, Killingworth and Clinton have been so very kind, compassionate and generous with their support in helping to raise both awareness and funding for CDKL5 research. Her father Mark says, “Avery is the light in our eyes that keeps us hoping and praying that someday her quality of life will be improved as better understanding of the CDKL5 protein and its function in the brain is embraced.”
Avery has only about 400 friends around the world currently diagnosed and this disease predominately affects little girls because it is on the X chromosome. Please join Wilcox Energy in our efforts to raise both awareness and funding for Team Avery & all the children who are suffering from this disease. Hope. Love. Cure.…Road to a Million!!!