Follow by Email

Thursday, October 4, 2012

Rebel with a Cause

I’m very much relieved that we won $20,000!  Thanks to all the begging and the harassing of our friends, family and community.  This was a grassroots effort, thank you all for helping.  We could not have done it without you.  There were 30,000 charities nominated and we placed 63rd. Not bad.

The contest just about broke me.  Pounding the streets soliciting votes from my neighbors, stalking the playgrounds passing out flyers to the parents and nanny’s. Having to tell them: “My son Jonah, has a fatal genetic disease, would you please be so kind to vote for him on facebook.”

I’m glad the contest is over, It’s hard to even write this re-cap.  But I need and want to say thanks to all of those who went above and beyond to help JJB win this.  Many of you stood by me passing out flyers, making phone calls, licking stamps and relentlessly harassing your FB friends to vote and for that I can’t thank you enough!

A friend of mine had a brilliant idea.  The last day of voting marked the first year anniversary of Occupy Wall Street.  Vanessa suggested that we take our cause to Wall Street.  What could be more appropriate??  JJB is in existence because our government doesn’t have the funding to help further the science.   Big pharma isn’t interested in producing a treatment for a rare disease. 

So here Chase is offering to give 196 charities a cut of five million dollars. A popularity contest... who can get the most votes on facebook. In return Chase gets to see your age, race and sex and they get good PR props.  I get to promote Chase and in return win $$.  The price you pay to save your child... Obviously I’d do it again in a heart beat.

So I made up some sandwich board signs. ‘Citizen Scientist’ a rebel with a cause.  Our government has turned their backs on our children.  Big Pharma doesn’t see the profit margin and Chase is using us for marketing.  It would have been brilliant, but occupy wall st had ended the day before.  So we hit Union Square instead.  We raised lots of eyebrows and got a lot of questions.  Hopefully it brought us a lot of votes too, but more importantly we made people think.

Jonah and I just got home from a whirl wind trip to CA, where we met up with my mom and Jennifer.  Jennifer hung out with Jonah, while Mom and I attended the RARE | Global Genes Project- Summit and Gala. I’ll give a better re-cap about the brilliant and amazing conference when I have more time.  I want to mention one thing  that has really hit home for me over the last month.

I along with 4 other parent advocates were asked to speak on the summit panels.  We each had different topics to touch on, but we all mentioned that we raise funds for medical research, everyone also mentioned that they have never received any federal aid.  These 5 groups have raised millions for medical research. 

Here we are driving the science and creating our own biotech’s.  We’re all on the verge of saving millions of children’s lives.  Meanwhile we’re creating jobs and saving our government millions.  So I ask... Where is our government bail out?  I guess the CHASE grant was it.