Help Cure Angelman Syndrome

Colin Farrell spoke to Ellen about his exciting new film. The actor has also been outspoken about a genetic disorder called Angelman Syndrome. If you'd like to find out more about Angelman Syndrome, and help them find a cure, visit CureAngelman.org.

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Comments

Jenny
209 days ago

I was watching segments hear on Ellen and you tube.(Cyber stalking basically:) In the last year have been interested in what he & Ellen has to say. They say allot of what I say and are like minded people. I came across one seg. Here where he spoke of his son & Angelman Syndrome; He mentioned "Puppet Master Syndrome". My foster sister( to me she is my sister) was diagnosed with this. This took me it a 3-4 month research frenzy. The science behind it is so fascinating to me and extremely exciting. FAST is one of the most impressive group I have come across. Regardless of any out come in the labs I think they r on the cusp of some great things (what they have discovered so far is huge). I wanted to go to the summit this year but I feel like this is for the parents. I run a day care and the summit had great info so I watched it the inter net. My sister came to live with us when she & I where 10, we r now 44. She was really one of the people that shaped as a person, as have my 3 children. She was not ever verbal, but her mom was "Mama" and I, she named me "Muppy". A named that I was proud to have! This was about 6 months after she came to live with us. We shared a room & I took care of her from 10 -15yrs old. Got her up, feed her bathed her,brushed her teeth, french braided her hair put her on the bus and was there to get her off the bus. She kept me up allot of nights. It was hard. I never held it against her. As I said she was the making of me. It was always such blessing as I look back. She taught me empathy, compassion,that every person has value and she was my first lesson in unconditional love. She was always my buddy, she nurtured my love of music (she loved AC/DC CCR Def-Leopard and we spent hours listening to music and dancing. She danced in her way), she would make me laugh and we found joy and peace in nature. She would communicate with me as she would no one else and she made me feel special and needed. I would get embarrassed and feel uncomfortable when people would praise me for how I took care of her,now that I am an adult I understand why. She was always giving me so much more than I could ever give her. She gave me a freedom from allot of social pressures others are burdened with,to take joy in simple things, to not be afraid of people that are wired differently, to treat every one as they are an equal to me (not less, also not more) she instilled in me to be strong as a woman,protect those that can't protect themselves and to be grateful for what I have. Even though she could be a mother she was there every step of the way as I raised mine. Now that my youngest is 17 and my 21 & 22 year old are out of the nest and I have time to catch my breath after raising them alone. I have time to really reflect. My 21 year old and my only boy asks me allot "mom how did you know how to raise us, u had no one else, what made you a smart Mom" I tell him It was my sister. I tell him what I have said here. I tell him that is why he and his sisters are the same.( they have a great love for people with different needs to) I have never loved based on looks, I don't dismiss people I have such a understanding of who I am and I get excited when feel I am changing and searching. I share u this because I want to convey that your Angles big or little are such a blessing to the world and have such a presence to bring people to a better version of them selves. To live in the moment, to laugh out loud, to love and when they have that mutual trust between them & another person they can take that person to such a heightened sense of self that it boggles the mind. So every day you plug through, every small victory that is truly immeasurable; just know they r able to teach those that come in contact with so much. IT up to the other person to receive the lesson. They can save a life, Break negative family cycles, mold lives for the better. My sister did that for me & my 3 children.

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naomi beahm
306 days ago

Our son Cameron is 3.5 years old & we just received a clinical diagnosis of Angelman Syndrome! What a Relief to finally have a diagnosis after all we've been through!!Our little man has had so much testing & such a rough road:-( & what a blessing to have a hot celebrity (Collin Farrel) as a spokesperson out there raising awareness! I wouldn't trade my son for anything in the world or beyond & am a proud parent grateful for FAST. I cant wait for the Chicago summit & a chance to meet Collin Farrel as well as other parents of angels:-)

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Nerrisa
673 days ago

Thank you Ellen and thank you Colin Farrell for helping us raise awareness about Angelman Syndrome and the amazing work being done by FAST.

xx
Nerrisa

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