When Amelia Beatty found out her 14-month-old son Orion had Angelman syndrome in September 2016, she immediately researched all she could about the rare neurological disorder. Within days, she learned that Colin Farrell’s 14-year-old son, James, has the same condition.
She found out about Farrell and his son while watching videos about his story on the website for FAST, the Foundation for Angelman Syndrome Therapeutics, an organization dedicated to funding research on the disorder.
“After my son’s diagnosis I felt kind of helpless and in a way hopeless,” Beatty, 37, tells PEOPLE. “But after finding out about the foundation, the fundraising efforts and this potential cure it was just so exciting to me that I needed to be involved.”
Angelman syndrome, which affects 1 in 15,000 individuals, can cause severe developmental delays such as a difficulties walking and talking, seizures, and balance issues. The genetic disorder stems from either a mutation or deletion of a gene on the 15th chromosome.
“In one of the videos, he was talking about how rewarding it was to see his son [James] take his first steps because James had tried so hard and worked so hard for that moment and because of all the effort that had gone into his first steps, which is so true,” Beatty says. “I felt the same way about my son when he first walked.”
On February 10, Beatty got to thank the actor in person at a Los Angeles dinner held for some of FAST’s top fundraisers. Beatty has raised nearly $89,000 for the foundation so far.
“It was so great to meet Colin,” says Beatty. “Not only is he an amazing actor, but he’s also a really kind human being. His partnership with FAST shows us how much he cares for not only his son James, but also for all of our kids with Angelman syndrome. It was a fun evening, we laughed a lot, we asked some big questions and we just had a good time.”
Farrell previously opened up to PEOPLE about the day that his son took his first steps saying, “When James took his first steps a couple weeks short of his fourth birthday, it was pretty amazing and humbling to see.”
“Colin’s support of FAST is amazing,” says Beatty. “He’s just an amazing celebrity so for him to partner with FAST is such a great opportunity for the foundation to spread awareness for curing Angelman syndrome. Every year he is the main celebrity at the FAST gala and he does such a great job getting us excited and making the party a real party.”
Farrell’s support for the foundation goes all the way back to the organization’s founding. In 2007, FAST’s founder Paula Evans was searching scientific journals for information on Angelman syndrome after her daughter Ainsley was diagnosed with the disorder.
She eventually found a research paper published by Dr. Edwin Weeber, a professor of Molecular Pharmacology & Physiology at the University of South Florida, on Angelman syndrome and arranged a meeting where he told her that millions of dollars would need to be raised to fund research on Angelman syndrome before they could hope to find a cure.
Soon after, Evans learned that Farrell’s son James has Angelman syndrome and decided to try to set up a meeting between herself, Dr. Weeber and Farrell to see if Farrell would be able help their cause. In the fall of 2007, the meeting was held and then less than a year later in August 2008, due in part to Farrell’s support, Evans launched FAST.
Today, Beatty says, “$150,000 is my fundraising goal, but on a greater scale, FAST’s goal is to raise $20 million. The cure is so close, it’s very exciting.”
- For more information on Angelman syndrome, Amelia’s story and how to donate visit http://cureangelman.org/.