Golf tourney to raise funds for research on rare genetic disease
Patriot-News - 5/30/2018
May 30--In the weeks after Leo Augello was born, his mom knew something was wrong, despite doctors ruling out illness after illness.
Leo wasn't growing properly, he couldn't hold his head up, he was never hungry.
"We ruled out everything from cerebral palsy to muscular dystrophy to gastrointestinal diseases," said Laurie Augello, Leo's mom.
"It literally was like a nightmare -- to look at your child and wonder what was going on," said Laurie, a former oncology nurse.
At 13 months old, Leo was diagnosed with Russell Silver Syndrome, a rare genetic disorder.
Now age 3-and-a-half, he has seven doctors in three cities, and has also been diagnosed with autism. "Your life flips -- it's just a different world," Laurie said.
She and her husband Steve are advocates not only for their son, but others with Russell Silver Syndrome and autism.
Two months ago, her family formed the LFA Foundation, named after Leo Francis Augello. LFA Foundation is unique in that it provides education, research and funding for both Russell Silver Syndrome and Autism Spectrum Disorder.
Leo's prognosis is a positive one. Russell Silver is treatable with medications including growth hormone. "Medically, physically, we expect him to reach his highest potential as a typical child," Laurie said.
He's had early intervention services started at three months of age, and he continues to have services such as speech therapy.
It's still too early to determine where Leo is on the autism spectrum, Laurie says. While Russell Silver Syndrome is a difficult disease, Laurie said autism is even more demanding in many ways.
"I never knew what autism could do to your life. It's all-consuming," she said.
The second annual golf tournament to benefit LFA Foundation will be held June 22 at Hershey Country Club. Deadline to sign up is June 16.
Last year the tournament raised about $33,000, and funds went to the Magic Foundation, which benefits research and education into Russell Silver Syndrome and other growth disorders and diseases.
This year, they want to also support autism as well as Russell Silver Syndrome research, and hope to help families with grants in the future. "It's so important to have a tribe of people to support you," Laurie said.
"If we could reach $40-$50,000, that would be awesome," Laurie said.
"I am a fierce advocate for anyone with special needs. This foundation will be where my heart is," Laurie said. "It's going to be a lifelong project for me."
What is Russell Silver Syndrome:
It is a genetic disorder of growth affecting the endocrine, gastro-intestinal, orthopedic systems in the body. Children born with it have a head size that is large for their body, and growth is impeded, with low muscle tone and motor and speech delays.
How to help:
What: Golf tournament and charity event benefiting the LFA Foundation.
Where: Hershey Country Club, 1000 E. Derry Road, Hershey
When: 11 a.m. registration; lunch 11:30-12:30; 1-5:30 p.m. shotgun start; 5:30 p.m., cocktails and dinner. Silent auction held throughout the day.
Cost: Individual golf package is $250; dinner only, $100; and sponsorships range from $1,000-$10,000.
Deadline to register: June 16, 23018.
Info: Visit www.LFAfoundation.org
(c)2018 The Patriot-News (Harrisburg, Pa.)
Visit The Patriot-News (Harrisburg, Pa.) at www.pennlive.com
Distributed by Tribune Content Agency, LLC.