Filner to Headline HD Capitol Hill Event

Congressman Bob Filner (D) of San Diego has agreed to participate in the first annual “HD Day on the Hill” being organized by the Huntington’s Disease Society of America.  Approximately 100 HD advocates, including medical professionals, will use the day in March to meet with their elected officials in Washington, DC and urge cosponsorship of HR 678, the HD Parity Act.

The HD Parity Act (HR678) was introduced in late 2008 by Representatives Filner and Brian Bilbray (R), also of San Diego.  Upon  introduction, the Society launched a grassroots campaign aimed at mobilizing the HD community in support of HR 678.  Thousands of advocates have urged their Representative in Congress to formally support, or cosposnor HR 678.  As of January 22 more than 80 had agreed to do so.

“HD advocates are the reason why we’ve seen our cosponsor numbers grow so quickly,” said Joseph LaMountain, who helped develop the grassroots plan and represents the Society in Washington, DC.  “Their personal stories are powerful and make a huge impact on policymakers,” he said.  “Many advocates have also been extremely persistent, which is absolutely essential.”

Congressman Filner will speak during a special event to be held in the new US Capitol Visitor’s Center.  Representative Bilbray has also been invited to participate and speak at the event.  Following the Congressmen’s remarks, advocates will participate in meetings with congressional staff and generate even more support for the legislation.

If enacted, HR 678 would make it easier for people with HD to receive Social Security Disability benefits and Medicare coverage.  The bill has been referred to the House Ways and Means committee; it does not yet have a Senate companion.

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