Login | February 10, 2025
Fundraiser helps families impacted by Angelman Syndrome
Almost 25 years ago, Robin Titus gave birth to her son, Corbin, who was eventually diagnosed with Angelman Syndrome. Today she serves as executive director of Love for Angels, a nonprofit group that offers help and support to children and families dealing with the disorder in Northeast Ohio. Presently she is gearing up for a June 2 Golf Invitational and dinner banquet fundraiser at the Fairlawn Country Club.
SHERRY KARABIN
Legal News Reporter
Published: April 2, 2014
When Robin Titus gave birth to her son Corbin almost 25 years ago she had all types of expectations for his future. But not long after, she realized something was wrong.
“I noticed his eyes were not following my movements,” said Titus. At the time he was 4 months old. The problem was one of many she would discover over the next few years as she went on a quest to find out the cause of her son’s health issues.
The journey took her from San Diego to northeast Ohio where he was finally diagnosed with Angelman Syndrome at 5 and a half.
Often misdiagnosed as cerebral palsy or autism, Angelman Syndrome is a neurogenetic disorder that occurs in 1 in 15,000 live births, requiring lifelong care by families and/or caretakers. The disorder affects both males and females equally.
“Angelman children have an unusually happy demeanor,” said Titus. “They smile the majority of the time and they are fascinated with water. Corbin is very well adjusted. He does not speak and he will never live on his own, but we have learned to communicate with him. He’s a big clown and keeps us laughing,” said the Munroe Falls resident who is now remarried. Corbin’s father passed away when he was more than 3 years old.
Dr. Max Wiznitzer, a pediatric neurologist at Rainbow Babies and Children’s Hospital, referred Titus to Dr. Suzanne Cassidy, a geneticist who diagnosed her son’s condition.
“Back then diagnosis was a greater challenge but now we have improved recognition and more refined technology to do it,” said Wiznitzer. “Basically these children are born floppy with later walking and balance disorders. They experience developmental delay and usually don’t talk; intellectual impairment range is normally moderate to severe.”
He said the children tend to have seizures and be hyperactive with associated sleep disturbances.
“It’s important that they be diagnosed as early as possible so they can get into educational programs and hopefully avoid some of the maladaptive behaviors,” said Wiznitzer. “They also have to be monitored for seizures. They are generally more disabled than the majority of people diagnosed with autism.”
He said the disorder occurs on the chromosome 15 inherited from the mother and is caused by a deletion, mutation or defect of one specific gene (UBE3A). Most people with Angelman Syndrome are deletion positive.
Titus’ son turns 25 in August. He has been seizure-free for 14 years and attends an adult daycare program, which Titus said he loves. The additional free time allows her to manage Love for Angels, a nonprofit organization that she and her husband founded 11 years ago, which offers support to children and families dealing with Angelman Syndrome in Northeast Ohio.
“Support for these families is so important,” said Titus, who serves as executive director and is now busy gearing up for the organization’s 11th annual golf invitational and dinner banquet fundraiser at the Fairlawn Country Club on June 2.
The money raised will go to help families attend the National Angelman Syndrome Foundation conference, which is held every odd-numbered year. “We have about 12 families in northeast Ohio and the money we make allows us to reimburse them for the expenses involved in getting to the conference,” said Titus.
“This conference is the only place these families can go to learn about the latest research and resources and connect with other families. In many cases, the conference allows them to get a feel of normalcy because they are surrounded by other families in the same life situation,” she said. “It gives them an entirely different perspective.”
The 2013 conference took place in Orlando; Anaheim is likely where next year’s event will occur. Titus said the locations generally are places where there is family entertainment so the time away can also serve as a vacation.
“It gives the rest of the family a breather,” she said. “The conference also has sibling workshops so the whole family can participate and learn.”
For those interested in purchasing tickets to the fundraiser the cost is $150 for the entire package, which includes golf, lunch, banquet dinner, raffles and silent auction. It’s $30 for the dinner only and there is a cash bar.
Research into the disorder is ongoing and Titus said, “hopefully in the next few years scientists will find some therapeutic method to help these children communicate or talk.
“As a parent it’s a big challenge because they cannot tell you where it hurts. Speech alone would be a huge benefit in caring for our children.”
To register for the event, go to www.loveforangels.org.