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Wednesday, January 16, 2013

Move it Move It Move it!

Move it Move It Move it.

It just sank in, that my plate for February-March is ambitious even for my standards!

First Up, I need Dancers for our World Rare Disease Day (WRDD) Flash Mob event and I won’t take no for an answer.  Any able bodied New Yorker is enthusiastically encouraged to participate!  After viewing the video don’t tell me that you’re not able bodied enough.  We’ll take all ages, all skill levels, no dance experience necessary to perform a fun hip-hop routine.

We have two rehearsals scheduled- the first for this Sunday 2:00 pm at Work Space, 275 Prospect Park West at the corner of 17th. The 2nd is on the 27th of January at Work Space.  More rehearsals TBA.  

But in the mean time start practicing. YouTube video is up now, click the link.

The dance will happen at an undisclosed location in Brooklyn (Participants will be given the location.)  Our dance will be accompanied by an urban drum performance, who will warm up the crowd.  I’m hoping that Jonah’s sitters clown brigade will be available that day to bust a move with us too. The drummers and clowns will pull people in, then out of the crowed at 1:00pm sharp our group of 40 plus dancers will bust a move. All in purple of course.  We’ll pass out flyers at the end explaining the importance of bringing awareness to rare diseases and promote JJB. Ok so if you refuse to dance.... you can pass out flyers.

If you want to help JJB raise awareness for rare diseases for WRDD, give me a shout out

For groups not in the area you can participate by throwing your own event.  Our video was designed to be set to any music and anyone can use it.  To hook up with other rare disease groups in your area reach out to the ‘MeetUp’ event coordinators at the Global Genes Project. Amy will be happy to help you find people in your area.

For more information on Rare Disease Day check out.
Hope to find a ton of responses in my inbox! 

p.s. Our Annual Walk is March 10th at Prospect Park.  Will need lots of Walkers too... You'll have JJB to thank for keeping you all in shape.

p.s.s. Almost forgot!  Last but not least our friends at the Rare Disease Legislative Advocates will be hosting an awesome event on Capital Hill.

I gave an interview to the Rare Disease Report on Monday, promoting the event.  This is an amazing opportunity for advocates to speak out to their Members of Congress. Here's the first part of the four part segment.
Go figure the Rare Disease Report has decided to break my interview into four segments.  One can only assume it's because I talk to much.  The interviews will happen over the next 4 weeks, so watch for them. :)