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| Rett Syndrome on The View |
Manny, me, Anna, and Monica Coenraads of the Rett Syndrome Research Trust taped our segment about Rett Syndrome on THE VIEW today! It will air this Friday, Jan. 28, at 11 a.m. The teaser at the start of the show is a beautiful tribute to Manny and his work there, as well as our Anna Banana. Our segment is right after the fashion show segment, I am guessing around 11:30/40.
The producer that produced our segment, Rachel, was fantastic, and has been working on putting this on the show since Manny first approached her with the idea. We kept most of it under wraps for so long because... Well, to be honest, I kept pinching myself because I couldn't believe this was all happening. The last thing we wanted was to disappoint. We needed to accomplish the first task, which was to represent Rett the right way, and second, to share our story, and third, to raise awareness. The cherry on top is to be able to share with the masses that our cure is close!
Manny spearheaded this and because of his dedication, really brought the first national spotlight to Rett Syndrome, ever. Facebook is already aflutter with the Rett community, spreading the word for people to "set your DVR's!" and it is all so very surreal.
I can't wait for you all to see it on Friday!
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| Me, Elisabeth, Monica, and Joy |
The hosts were so gracious, and so personable, that sitting on the couch was not near as daunting! We were so ready to share "the Rett story." If someone would have told me that within Anna's first year of her diagnosis we'd be on national television raising awareness and reaching such a vast audience, I would have never believed it. I am so proud of Manny... And I am so very proud of Anna.
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| Anna with Sherry |
After the taping, Anna wanted nothing more but to get out of her dress and into her comfy shirt and leggings. It was a hard day for Anna, who handled the craziness like a champ, but nevertheless she was off of her schedule and out of her comfort zone. I can't tell you how many people came to the guest room after the taping to say hello and meet our rockstar, Anna.
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| Ingrid, Sherry, Terri, Kelly, Monica, Jesse, Manny, me and Anna |
A tremendous blessing (as if this weren't enough!) was when we found out that Ingrid Harding, co-founder of RSRT and founder of Girl Power 2 Cure, and fellow Rett mama and friend (so many titles!), could come for the taping, as well as Terri, of GP2C and friend, and Kelly, of GP2C and friend. These women are amazing. No better description. Amazing.
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| Girl Power! |
After the show, we headed over to Peter Hurley's studios for a photo shoot and to have some fun! Peter and Ingrid have been friends since they were 7, and when she told him she was coming to New York for a visit, where he now works and lives, he asked her to bring her friends over and take some photos. It was a blast!
This may be the cheesiest line I have ever written, but, today, my cup runneth over.
14 comments:
And your poor Dad got up at 4:20 AM and sat in the Baltimore airport for 8 hours trying to get there. Freakin winter weather.
AMAZING!!!!!! I am so excited for you and your family. You are doing some wonderful work and are in my prayers. Can't wait to tune in.
A million thank you's from all of your Rett Family. You guys have made us so proud. Hugs to Anna for being such a trooper! You guys ROCK!!!!!
Hello I am a close friend with the Brooks family. This is the most amazing tribute for the girls. I believe this is just the beginning of many, many great things to come.
WHOO HOOO!!! Go G fam!! You guys Rock! Can't wait for tomorrow! Hugs from the Adirondack Daltons!
So proud of what all of you have done with this amazing opportunity!!
Can't wait to see the show tomorrow.
I can't wait until tomorrow. I work but I was told by a dear patient I can view it on her TV
Thanks so much for sharing your story on The View. I have a daughter, Abby, with Rett as well. This will surely give our cause a great deal of much needed exposure. Can't wait to see the show tomorrow!
THANK YOU for allowing me to be apart of this experience! You are AMAZING! I shared your blog on Brooklyns blog this morning...hope that is ok!
LOVE ya girl!!
PS...I still say meeting you and Anna (and Manny) was WAY more exciting than meeting Whoopi!!
I just watched the Rett segment and was in tears the entire time. My daughter, Reagan, is close in age to sweet Anna and was diagnosed last January. It is a great day for Rett Syndrome and my words can not express my gratitude to you and your family for sharing your story to bring awareness. We WILL find our cure!
Stephanie what a surprise when I turned on "The View" today and there was an old friend from high school. All I want to say is what a beautiful family you have and that you should be very proud.
Hello! My name is Carrie and I'm friends with your Mother-In-Law and fam. I have read your blog before and love your family. You guys did a great job on the show today and we happily donated the $10 through the text message. You're in our prayers and we're very proud of you guys. :)
Kudos to all on a truly GREAT job getting the word out about Rett syndrome! Many thanks from this Rett Dad!
Hey you guys...Terrific spot on The View. I was able to find it on YouTube, we were out of the country when you did it and had missed it.
We made a small donation to the Fund again this year, just now.
We love you and miss you.
chaz & ileana mena
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