DC advocacy

THE PORTNOY SISTERS STORM CAPITOL HILL

DAY 1

As soon as we arrived, the training and education began. We learned about how bills move through congress and the senate, how they (hopefully) get authorized and get funding appropriated. Even though a bill might get pushed through or renewed with a certain price tag attached to it, it doesn’t necessarily mean that the requested amounts of funds are what is ultimately appropriated. And the really frustrating part is that once you’ve done all this, you’ve gotten your bill passed, gotten it through appropriations, the recipients might still not get all of the promised funds when it comes down to it.

This first day, all of the families in attendance had to introduce themselves and explain what or who was the motivation for their attendance at the conference. I’ve heard a lot of personal stories from other families but when you hear over a hundred of them, one after another and coming not in an e-mail or on a message board but directly from the mouth of a crying parent, aunt, uncle or grandparent, it is overwhelming.

 

It is the life in your years and not the years in your life that matter in the end

A father got up to share and said that their son had just been diagnosed with Beckers muscular dystrophy, which has an average life expectancy of mid to late adulthood. I remember that when he shared, I thought to myself “wow, are they lucky…”. That just goes to show you how totally insane this disease makes you, as I’m sure the last thing they think of themselves as is “lucky”. When you think about Javier and how bad his prognosis is, it is hard to remember that there are families with 2 and 3 affected boys. It brings even this horrible situation into perspective a bit.

DAY 2

This was our first day of going around to all of our district’s congressional offices to make our appeal. Since we are from New York, we didn’t have to put up much of an argument to get the representatives staffers to agree to sign onto a bill that provides funding for research and care specifically related to the most severe forms of muscular dystrophy. Believe it or not, there were constituents from states that got a negative response to this request! I’ve made note of all the states that you would never want to live in should you find yourself afflicted with a fatal disease and would be happy to provide you with a list…

By the end of the first day, I started coming down with the cold / flu virus that has touched nearly everyone by now and was forced to return to the hotel to suffer in solitude. What I should have done is gone around to the offices of politicians who would not sign on to our bill and spread the virus that I was infected with.  Stasia thought it would be rude.

DAY 3

I remained in bed and Anastasia pushed on, visiting offices in the senate buildings.

The best part of this day (aside from being in the offices of Schumer and Clinton) were when anastasia saw the secret subway that runs all over dc and is for the use of politicians only. I had told everyone about it on day 2 but no one believed me. I cannot believe I was sick and missed this sighting. Stasia took a picture and e-mailed it to me. No one has heard from her since she took a photograph in the senate building…

We did our part. We were proactive, a part of the solution (we hope). Then it was back home to the reason we do all this in the first place, our families. My sister’s friend Jen recently imparted the wisdom that “it is the life in your years and not the years in your life that matter in the end”. I don’t know if all this we are doing is going to make the difference in the end that we are all desperately hoping for… and I’m not saying that we are going to slow down on our search efforts, only that I am going to make the years Javier does have as happy as I possibly can and try to soak up every last bit. Now everyone get off your computers and try to live by the same credo!

 

 

javier 2008 blog

A RACE AGAINST TIME

It’s been awhile since I’ve done an update and there is so much going on that I want to share.

We are all happily surprised and extremely grateful that charley’s fund is still receiving donations in Javier’s name as a result of our first fundraising appeal. The generosity shown by family and friends (and friends of friends) overwhelms us, fills us full of hope and moves science that much closer toward finding a treatment or cure for Duchenne within Javier’s lifetime.

The more scientific advances and research I read about, the more certain I become that the science behind the discovery of a treatment can and will be solved. The question that keeps me up at night is whether or not we can conquer the clock.

At the end of each day as we put Javier to bed, I am very aware that the day that has just passed is one of a numbered few. Every night I watch him sleep, sometimes for hours, studying his beautiful features and finding it impossible to grasp the sheer havoc that is running through his seemingly perfect little body. I look at his legs, wondering if science will figure this out before they fail him. I listen to him breath easily, knowing that one day, that act that we all take for granted will be taken from him.

In keeping with my family’s commitment to Javier, to do whatever is within our power to change his fate, we press on, both planning and participating in new events. My father is funding anastasia and my trip to Washington, DC next week, where we will speak on Capitol Hill to request the reenactment of the MD Care Act. We will again have the opportunity to speak with leaders from the NIH and the FDA, as well as scientists who are leading the fight to find a treatment or cure. As you can imagine, we are totally excited to participate!

We are also in the beginning stages of planning the next hope for Javier event. I am so pleased to announce that DMC (of RUN-DMC), one of the founding pioneers of rap music, has committed to participate in our event. Darius (of Darius Goes West fame) and the entire DGW crew will be on hand and Darius (Big D as he’s known in rap circles) will perform for the crowd with DMC! We are working on even more surprises to ensure a fun filled evening and will keep you posted with all the details.

Thank you to all who take an interest and / or participate in the journey toward saving Javier’s life. We could not go it alone.