Take the time to reach out to your representatives

Couple of happy updates to share with you all this week.

You may remember that earlier this year I wrote about a small, but nonetheless significant, issue facing many of our residents in southern Spring Hill.

This problem concerns the lack of sidewalk on Quality Drive. Combined with the absence of a crosswalk, handicapped and elderly residents are prevented from having safe access to the hospital and local shopping center.

This problem was originally brought to my attention by Ms. Arlene Sollis, a heroic octogenarian who has battled a severe cerebral palsy condition her entire life. She wasn’t supposed to live into her teenage years. And yet, eight decades later, she is still fighting the good fight for safety and access, for herself and others.

So back in February, the prospects of the Quality Drive sidewalk project were questionable at best. We didn’t really know how long it was going to take to complete. We didn’t even know if there would be adequate funding. And we certainly didn’t know whether Hernando County would view it as a priority.

But now, just a few months later, we are many steps closer to making this project a much-needed reality. I am extremely pleased that the Hernando County Commissioners recently voted to single out, amplify and expedite the 1,000-foot strip on Quality Drive as its own independent project. Adding to the great news, the Commission was also able to approve an ample public-private partnership funding mechanism thanks to some good folks at Cemex who swooped in last minute to push it over the top.

We are looking at a quicker completion timeframe, and there are the resources to make it happen.

This is a win for those with accessibility needs. This is a win for everyone who uses Quality Drive, both pedestrians and drivers. And, perhaps most importantly, this is a win for our beloved community.

Cockayne Syndrome (CS)

And this brings me to an inspiring meeting I had in my Washington office with Ian Britt. This 26-year-old is also from Spring Hill and suffers from an extremely rare degenerative terminal illness called Cockayne Syndrome (CS). It’s estimated that there are only 50 living children in the United States with this condition.

Heroically, many traveled with their families to Capitol Hill to meet with their Representatives. Ian was joined by his mother and two brothers, one of whom is in the Army, and the other who will be shortly – their spirit was undeniable and unbreakable. Wendy and I were extremely touched by their love, positivity and perseverance as a family unit. Even in the face of prolonged hardship that comes with supporting a child with a condition that requires constant attention, dedication and sacrifice, they showed tremendous strength, vision and optimism.

Ian as well was not meant to live long after his birth, and the family is incredibly honest about his ever-worsening health. The truth is he doesn’t have much time left on this earth. There is no known treatment for Cockayne Syndrome. The condition is mired by premature aging, microcephaly, sensitivity to sunlight and neurological delays. And still, he was in full spirit, smiling, fist-bumping and excited as could be to visit our Nation’s capital.

The reason they came was not to ask for anything in particular.  They just simply want to raise awareness – awareness for the fact that rare diseases are just that, rare. And as such, they receive much less attention, much less dedicated funding and much less scientific research.

You see, the free market is a fantastic system, and it’s responsible for this incredibly prosperous society that we’ve built. And limited government is absolutely part of the secret sauce in America’s amazing experiment.

But there are blind spots that markets can’t reach.  Pharmaceutical companies simply can’t justify spending the large amounts of R&D dollars to create a cure for something that only affects a few dozen people every year.  They’d never make that money back.  So if the government is going to invest in basic scientific research, the pursuit of treatments for rare diseases seems a sensible place to allocate those resources.

Who knows what else we may discover along the way.  Frequently, some of our greatest breakthroughs have been surprises in pursuit of something very different.

In closing, these are two perfect examples of why it’s so important to take the time to reach out to your representatives.  While American’s have an understandable belief that “Washington doesn’t listen”, the truth is, many individual representatives do.  It’s how we learn, it’s how we grow, and it’s how we become more effective advocates for the people we represent.

You would be amazed at what a difference it might make.  So on that note, please keep me posted as things come up and as always, have a safe and restful weekend.

Rich Nugent (R), Brooksville,
Member of Congress,11th Congressional District