Clouds, May 2010

Clouds, May 2010

Thursday, March 8, 2018

In Like a Lion

In between power outages & snow storms, we made it to DC & back again just in time.

I think most people see there's something we do in DC when we all dress up in business attire, meet on the steps of the Capitol Building, take pictures, & then usually take some more pictures with people who look very important. And everyone who goes has something to do with fragile x... or something like that... but I don't believe most people completely understand what the deal is.

This is called the National Fragile X Foundation Advocacy Day! While the social media posts (somewhat) show the importance of what we do, certainly the pictures & the captions hardly tell the whole story. 
Advocacy Day is an annual two-day event that anyone can register for & attend. Anyone. The first day is a training day when we review the "asks" for that particular year, & then constituents from each state have mini practice sessions. We rehearse how we will present at our individual state & district meetings on Captiol Hill. The NFXF works with a consulting agency which sets everything up for us-- all meetings are prearranged. Day two is Advocacy Day when we are on Capitol Hill. 

Typically when we visit the offices of our Senators or Congressmen we usually meet with their staff-- such as correspondents, directors, counsel members, or other legislative assistants. There are times when advocates get lucky & do meet with the actual Member of Congress or Senator (albeit less likely). But it's important to know that either way the staff are the people who the lawmakers can count on, to help filter where they often focus their attention. Most of all simply showing up is already making a tremendous impact.

For us, here is the face of the one who sparked our motivation on this journey.
We want our lawmakers to know why. We begin our meetings with a brief overview of who we are & why we're there. Some of us create a leave-behind sheet as well with a little more information about us & about the Foundation. 

So what exactly do we want our government officials to know? And how do we say it? These are our "asks".

Our 2018 "Asks"
Beneath the surface this is not just about the community of people affected by fragile x.
In the broader perspective the benefits of every "Ask" are truly widespread. 

Here is what we discussed with our members of Congress & their staff for NFXF AD 2018:

1. A request to sign the Dear Colleague letter to the Appropriations Committee to support Fragile X Research at the NIH & CDC-- National Institutes of Health & Centers for Disease Control. (By the way, a "Dear Colleague" letter is a communication that is distributed to encourage cosponsoring, supporting, or in some cases opposing a bill.) Our Dear Colleague Letter also includes language to support newborn screening programs & future funding to help maintain research & clinical trials.

2. Advocacy Day is also about continuing appropriate education. This year we are asking for Cosponsors of the RISE Act so that existing IEPs (Individualized Education Plans) can be used past the age of 21. These "living, breathing" IEP documents grow with the student from the time they're a toddler in preschool all the way through high school & extended school years. Yet currently the whole process starts over again from scratch after they age-out of the IEP that they grew up with. Instead, the RISE Act would help individuals qualify for the necessary accommodations in post-secondary learning institutions, without creating burden or increasing efforts of families or the schools.

3. In addition we want to help increase independence. Another 2018 "ask" is to support the SELF DRIVE Act or AV START Act to establish the potential to use self-driving cars for individuals who are not able to drive.  These bills would allow the Department of Transportation to study the feasibility of self-driving cars without licensed drivers. When deemed safe by the federal government use of these vehicles would be authorized throughout the United States. Not only has the technology already been conceptualized, but the House passed the bill to authorize the government research & promulgate regulations. This would be unprecedented in establishing & increasing self-sufficiency for countless individuals with varying disabilities, of course including those in areas with inadequate public transportation.

4. Currently there is no cure for fragile x. Furthermore, like so many rare diseases & disorders there are no drugs specifically indicated for the treatment of fragile x syndrome. Another 2018 "ask" is for co-sponsorship the OPEN Act. This would greatly increase efficiency towards appropriate drug treatments. OPEN stands for Orphan Product Extensions Now. This legislation to accelerate cures & treatments provides a six month market exclusivity extension, for a drug being re-purposed for a rare disease (or disorder) treatment. The sponsor company would demonstrate that the re-purposed therapy is designed to treat a rare disease, & thus obtain an approved rare disease indication from the FDA on the drug label. Not only is re-purposing drugs more efficient because it is much quicker & significantly less costly, this process would also present far fewer risks than traditional drug development.
There are approximately 7,000 rare diseases & 95% of them still have no FDA-approved treatment. This would greatly reduce the patients using untested & potentially ineffective drugs off-label. In addition this legislation could double the number of treatments for rare disease patients. Many of these drugs would be priced at major market prices, consequently reducing the average cost.

5. When discussing the OPEN Act, we also use this opportunity to reinforce the crucial importance of Medicaid, SSI, & Health Insurance-- especially as they relate to coverage for preexisting conditions. 
We encourage members of the House to join the Congressional Fragile X Caucus. This is the most effective way for our representatives to stay informed on all of these issues. Our families struggle to raise our children amidst tremendous expenses... we know the struggle will only be passed on to them if they are not able to work at a level to provide for themselves into adulthood... & we NEED the help of our legislators to be a voice for the intellectual disability community. 

Here we are on the morning of  Advocacy Day assembled behind Congressman Gregg Harper from Mississippi (taking a selfie).
Rep. Harper has a personal connection to our cause through his (now adult) son Livingston who has fragile x. The entire community is forever grateful for his years of support as our champion on Capitol Hill. Upon his retirement from office we acknowledge the breadth of privileges he has afforded us... from demonstrating how fragile x reaches across the aisle in a bipartisan Fragile X Caucus... to leading us through every exclusive, personal tour within the Capitol Building... to the unique opportunity to sit in the actual seats of the House Chamber (which are bulletproof by the way & have gas masks underneath them-- just a bit of trivia for you)... to his candid storytelling of countless historical details... even including an explanation of where the expression "across the aisle" came from in the first place. 

Following Rep. Harper's retirement, moving forward the beginning of each Advocacy Day may feel different. But the strength & impact of our efforts will remain unparalleled.

The years have not been consecutive, but to the best of our memory this was my sixth time attending Advocacy Day & Dan's third. In addition we have had family representation during NFXF AD for at least seven of the twelve years since Hayden was diagnosed. With the exception of the first two times that I participated, every year thereafter I have attended AD not only as a parent but also as a co-leader of the NJ Chapter. 

On Tuesday, March 6th our day began around 7AM on the steps of the Capitol Building. Throughout the day we had meetings with the offices of Senator Robert Menendez, Senator Cory Booker, Congressman Rodney Frelinghuysen, & Congressman Josh Gottheimer. This year the NJ Chapter was missing a couple of regulars, but even so there were still nine of us representing NJ state alone.
Participating in Advocacy Day as a whole, we were among 142 total advocates from 27 different states. 

Mother Nature is a force to be reckoned with but so are we.