We have a team of Liam's "soldiers" going to NYC next week, (Wed. the 27th) to help promote awareness for Histiocytosis. We thought since the movie, Extraordinary Measures was being released in theaters that we would try and promote this orphan disease. Also, since there is an information window display regarding Histiocytosis in Rockefeller Center, we thought this would be good timing. Since there is so much publicity about the movie and it being based on a true story, it would be a great time to get the word out there about Histiocytosis. We have been in touch with the HAA and told them our idea and they wanted to help in any way, so they sent Rochelle information cards, lollipops with wrappers that say "HISTIO SUCKS" on them to be passed out, and blue balloons. Thank you HAA for your help. Rochelle has made royal blue fleece scarves that she will pass out to the TODAY SHOW crowd outside so that we can get the crowd in blue and they can ask us "What is this all about"? How wonderful would it be to say Histiocytosis on national TV? Anyone that would like to join these soldiers, you can contact Rochelle at dirtdetective@comcast.net.
"One person with passion is better than 40 who are merely interested."
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4 comments:
I just saw you on the TODAY SHOW and had to check out your website. I hadn't ever heard of this disorder/disease either. My heart goes out to you! I'm a mommy as well, and your precious Liam is now in my heart forever as well.
I think what you are doing in his memory is wonderful and he's SHINING down on you now!
God Bless~
Shane Davis
I just wanted to let you know I just saw you on The Today Show. Your hard work is getting people to understand this disease. Thank you for all your hard work. I have a niece who has a rare genetic disorder called GA1 (Sarah Grace) so I somewhat understand some of what you went through. When there isn't awareness there is just involuntary ignorance. Can HLH (or FHL) be diagnosed through extended newborn screening?
Saw you on the Todsay show, your message was heard! Thank you for letting people know about this disorder from one mom of an angel to another. God bless you and your sweet Liam,some children are just to beautiful for this earth.
Nicki Diedrich
Just saw you on the Today show, Bless you and your efforts!
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