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Wednesday, April 9, 2014

exposure vs exposed

Exposure... exposed.

Our families are letting the press into our homes our lives, we’re exposing our beautiful children, we do this in hopes of convincing the world that we need treatments. As parents we struggle with the exposure.  Do we really want the world to know that our children are different?  What if someone shows our child the interviews of his/her parents crying on t.v.?  What if another child asks our children whats wrong with them? What kind of impact will it have on our healthy children? 

We have thought long and hard about these questions. I realize that if we’re going to have a chance in saving our children’s lives, we have to let people know whats going on.

For me admitting to strangers, that my son is dying and I need your help, is excruciating. I get by, by telling myself that running a foundation and a start-up is just my job.  It’s a good job, I’m helping to save lives.

Recently our community has enlisted the help of actors and athletes to help convey our message.  I have yet to share the videos of Jonny Lee Miller’s plea to congressional legislators and their staffers to support our rare disease initiatives.  Until now.

When Jonny looked over the list of panel speakers for the rare disease caucus briefing.
He asked me: "What do you think my role is amongst the scientists, parent advocates, pharma, FDA and NIH employees?"

I told him:  "Your role is to get our legislators to show up and listen."

Jonny did just that, his presence packed the room. Jonny’s speech echoed exactly what our families and industry have been saying.  His words come from a dad, not an actor, but from a dad of a healthy child, whom has the depth and compassion to place himself in our shoes.

Here’s Jonny’s speech.
Watch it and think about what would you do if you were in our shoes.

I talk a lot about JJB’s sister organizations: Sanfilippo Sud (France), Sanfilippo Barcelona (Spain) and the JLK-Sanfilippo Research Foundation (MA).  Sanfilippo Barcelona has a special relationship with Xavi Hernandez and Andrea Iniesta, these men are world famous football players of FC Barcelona. 

Xavi recently joined forces with the financial institution La Cacia, La Cacia has created an ad campaign featuring Xavi Hernandez, Belen her son Pol, Raquel her daughter Joana and Janette with her son Inaki.  JJB sponsored our primary investigator, Dr. Brian Bigger to talk to the science in the ad campaign. :)  For me the ad is personal, watching Brian interact with Joana is priceless.  It’s actually rare for a scientists to meet a child that their life work is based on.

The ad is beautiful, our families are compelling, dynamic and raw.  The ad will run nationally in Spain, it’s part of a platform designed by La Cacia.   In every bank branch customers will have the opportunity to make “micro-donations.”  Here’s the ad. FYI, once Xavi’s commercial runs the clip ends for a moment, then the infomercial starts.
I hope all of you will root for Spain for the world cup!

Eliza’s parents found the expertise to help them make an awareness campaign go viral.     It’s an unnerving guilt I have watching this family make a huge impact in the rare disease community, on one hand you can’t stand the idea of another family living this horrific journey.  On the other you can’t help but to feel a bit of relief in having another family join in on the fight.

Awareness can be as impactful as funding.  We need to find the other children and educate clinicians on the signs of Sanfilippo.  An early diagnosis gives a preemptive strike against the deterioration of skills.  This is why our families put our lives out there, we’re compelled to not only save our children but to help diagnose and then treat the next generation.

MPS awareness day is May 15th.  Jonah’s school has agreed to send a letter home with all their students, asking them to wear purple in honor of MPS awareness day and to join us at the park on May, 4th.  This all started with Dr. Cao and an early diagnosis,  I hope all of NY will join South Slope Pediatrics walk/run and support Dr. Cao’s mission to help us fund a cure and raise awareness.

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