This is such a worthy cause that I definitely believe this article deserves it's place on the CFWB.... Meagan Cross' fight to find a cure for her daughter's rare disease has rallied high-profile support from one of Hollywood's hottest stars - Colin Farrell.
Her blonde curls, blue eyes and a laugh that lights up any room hide a life sentence with no answers for Molly Cross, 2.
She was diagnosed with the severe neuro-genetic disorder, angelman syndrome, last year and Farrell’s four-year-old son James shares the same condition.
Ms Cross, from Manoora, will meet the Golden Globe winning actor at the Foundation for Angelman Syndrome Therapeutics’s research benefit dinner in Chicago in December.
Angelman syndrome is a severe neurological condition characterised by developmental delays in speech and motor co-ordination – as well as a happy disposition, frequent laughing, smiling and excitability.
She said it was going to be her first time away from Molly and her three-year-old sibling Eva.
"I don’t know how I am going to cope but I am only going for four days," Ms Cross said.
"It’s great that a celebrity has come on board – it will boost the profile of rare genetic disorders and build hope in the race for a cure."
Ms Cross said Australia was the only developed country in the world that did not have a rare genetics foundation.
"I would like a group established to engage at a federal level to provide for rare disorders," Ms Cross said.
Angelman syndrome is generally not diagnosed until three years of age and affects between one in 15,000 to 30,000 people.
The disease was named after Harry Angelman, the doctor who first investigated the symptoms in 1965.
Ms Cross was instrumental in bringing Dr Edwin Weeber to Australia in July to talk about his recent discoveries that reverse the deficits of the syndrome in mice.
Ms Cross said his breakthrough provided hope.
SOURCE: http://www.cairns.com.au/article/2009/10/17/70455_local-news.html
http://www.cureangelman.org/
Yes gemini,thank you for doing it , that is a great cause. My brother has a rare muscular distrophy that doesn't kill, just criples, and it is so hard to get people research on "subgroups". Hope Colin does attend this time. Does anyone knows for sure if he didn't go on CHIMES?? Ferb
ReplyDeleteSo glad Colin is doing this, this is why I will always have a soft spot for Colin Farrell and for those big brown eyes, cute nose, Irish accent, incredible talent,charming smile, down to earth attitude..... (the list is endless)
ReplyDeleteGood luck to him, her and the little girl.
ReplyDeleteThanks. ;)
ReplyDeleteSweet little girl. Colin has a good heart.
ReplyDelete