HR 804
Larry Asbury

HR 804 is a bill that was introduced to congress on February 3, 2009 by Representative Baca (D-CA). This bill directs the National Institutes of Health (NIH) to increase research into Primary Lateral Sclerosis by two million dollars over the next five years and requires the director of NIH to “expand, intensify, and coordinate research activities.” As of July 18, this bill has seventeen cosponsors and has been referred to the House Committee on Energy and Commerce. However, there has been no further activity to move this bill forward. Larry Asbury, SPF Board Member has been to Capitol Hill to advocate for support, but he needs help from all of us.

SPF members, friends and family members who are interested in this bill need to contact their local House Member, their two Senators and even the members selected to serve on the Energy and Commerce Committee. Legislature gets pushed through by numbers – numbers of voters who demand action! In order to find your elected representatives, go to www.congress.org.  Click on the box that says, “Find Your Officials”. Enter you zip code in the relevant box and click “go”. In some cases, the full nine-digit zip code is needed. The results page will show federal officials on the left and local and state officials on the right. By clicking on the names of your Senators and House Members, you should be able to bring up the contact information needed to send your letters.

Forms letters should not be used. Take the time to write your own. Your personal stories, experiences and emotions will make more of an impact – be as personal as you feel comfortable. Don’t get discouraged, legislation is a cumbersome and lengthy process and remember – elected officials work for YOU! HR 804 is important to all of us. Even as this is written, there is hope that this piece of legislature will be amended to include HSP.

In conclusion, it is important to realize that every single one of us involved with PLS and HSP need to get the attention of our elected officials. Write those letters and visit Capitol Hill – the noisy wheels get the attention, not the silent ones!

*This summary relied heavily on previous articles in Synapse, the SPF web page and Larry’s written presentation at St. Louis.

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