Accomplishment for NFXF Advocates

UPDATE October 16, 2008

NFXF Advocacy Update-Another Significant Accomplishment for NFXF Advocates

 
TO:        All Advocates and Friends
 
FROM:    Your NFXF Washington Team
 
Dear National Fragile X Foundation Advocates,

 

Congratulations! Your advocacy efforts made possible a new $1.6 million grant announced last month that will support research of emerging treatments for Fragile X syndrome and the more widespread availability of clinical treatment throughout the U.S. and Canada.
 
On September 10, the National Fragile X Foundation (NFXF) and the Center for Disease Control’s National Center on Birth Defects and Developmental Disabilities, the Association of University Centers on Disabilities, the New York State Institute for Basic Research in Developmental Disabilities and the Data Coordinating Center at Columbia University announced an agreement intended to bring better care to the more than 100,000  Americans with Fragile X Syndrome and the more than 1,000,000 carriers and their families. The effort will advance the core activities of the Fragile X Clinical and Research Consortium (FXCRC), a project begun by the NFXF in 2006 to advance clinical practice and to facilitate coordinated, collaborative multi-site research. This exciting development was only achieved because of the outstanding efforts of you and all our NFXF advocates who have pushed for more funding and focus for the CDC Fragile X Public Health Initiative.

McCain on Disability Policy

 

If these sites don’t answer your questions contact the campaigns directly:

 

Kareem Dale
National Disability Director
Obama for America

kdale@barackobama.comDonna Jones
National Coordinator for the Americans with Disabilities 
McCain Coalition, 
djones@mccain08hq.comAs a new President and a new Congress take office in January, we will have many new policymakers to educate about Fragile X. That’s why it’s so important that you join us in Washington for our annual advocacy conference on March 3-4, 2009 to continue to engage our political leaders in the most important campaign – to improve the lives of people with Fragile X through our focused research, public health and policy initiatives.

· We’re all concerned about issues like research, education and employment. Solutions to these big problems require a partnership with government and government only listens when we work together.
To effectively influence government we need a network of people from a broad geographic cross section of our nation (and our states) to all be pushing for the same actions at the same time.
 
· We can each make a difference through our actions and statements as individuals, but we cannot light up the world alone.
Invisibility requires our compliance! Every time one person speaks out about Fragile X, a candle is lit through knowledge and awareness. But thousands and thousands of such candles are needed to provide a sea-change. Every elected official, journalist, educator, employer, mom, dad and peer needs to see your light.
 
· Until we have better treatments we have communication and we have connection.
Allowing individuals to give voice to their challenges, to educate others and to request a better world is a way for people to constructively contribute with dignity to the battle. Through participation in advocacy activities families and individuals with Fragile X have the opportunity to substantively contribute to the hard work of finding solutions.
 
· Working together on advocacy provides a unique and meaningful way for families to support one another.
Participation in Advocacy Day and other grassroots activities allows us to connect with one another while actively working side by side for a better, more inclusive world.
 
· Advocacy allows us to ease the burden for the families that follow.
When we work to provide more options for our families and more research aimed at finding better treatments, we are providing a gift for future individuals who will surely be spared some challenges because of our work.
 
· Advocacy provides unique opportunities to meet and interact with the leaders and researchers who are at the vanguard of the fight.
Advocates become savvy and connected regarding information and research. Advocacy Day is a meeting place and access point for those at the forefront of our movement.
 

For more information and to register CLICK HERE, or go to http://www.fragilex.org/html/advocacyregistration2009.htm

If you have questions contact Public Policy Chair, Jeffrey Cohen at: j.cohen@fragilex.org or Washington Representative Leah Howard at lmhoward@bakerd.com or 202-589-2806.
 
Thank you.

 

Your NFXF Washington Team

 

 

Here’s a few more reasons you need to join us in DC: