Posted at January 14, 2014 | By: | Categories: 2014,Advocacy Day | 0 Comment

“Without question, it works.” A message from the Chair of Public Policy

Jimi_Buffy_Capitol_DCHello,
My name is Jimi Grande.

Some may call me a Washington Insider.
I work inside the Beltway as a lobbyist who meets with Members of Congress every day trying to make a case for action. My office is right next to the Capitol.

You could also call me a Fragile X Insider.
My son is living with FXS, my wife is a leader of our local Community Support Network Group, and I’m an NFXF Board of Directors Member as chair of the Public Policy Committee.

Every year, we visit our Members of Congress.
From my personal and professional experience, I can assure you that there is nothing more powerful in my town than a constituent who comes in to meet with their Members of Congress.

Without question, it works.
Our advocates are responsible for helping secure millions of dollars for FX research and to establish our clinic consortium around the country—bringing doctors, therapists and families together. However, most Members of Congress are very busy and have short memories. Unless we keep returning each spring to make our case, other groups seeking the same funds may move ahead of us and our progress could slow.

So, this March, join us in Washington.
If you really want to make a difference in the course of Fragile X, both nationally and in your own home, then please join us for National Fragile X Advocacy Day on March 4-5, 2014.

You and everyone impacted by a Fragile X-associated Disorder will be glad you did.

TonyFerlendaSplash