The ALS Association to Advocate on Behalf of Patients with Lou Gehrig’s Disease at ALS-Specific Public Hearing Hosted by U.S. Food and Drug Administration on February 25

February 22, 2013

MEDIA ADVISORY

WHO:    The ALS Association will be represented by Jane H. Gilbert, President & CEO; Lucie Bruijn, Ph.D., Chief Scientist; and Ken McGunagle, Chair of The Association’s Board of Representatives.

They join a list of more than 60 people who will speak during this public hearing to a panel of representatives from the U.S. Food and Drug Administration (FDA). This list includes individuals from nearly every major organization involved with amyotrophic lateral sclerosis (ALS), ALS physicians and researchers as well as dozens of people with the disease and their family members. 

WHAT:    For the first time ever, the FDA is hosting an ALS-specific public hearing to gather perspectives from people in the ALS community regarding the development of drugs for the treatment and management of ALS. Presently, there is no cure for the disease and only one drug approved by the FDA that modestly extends survival.   ALS is fatal in an average of just two to five years from diagnosis.

WHEN:        Monday, February 25, 2013, 9 a.m. to 5 p.m., EST

WHERE:        FDA White Oak Campus, 1093 New Hampshire Ave., Bldg. 31, Rm. 1503B, Silver Spring, Md., 20993-0002. Security entrance through Bldg. 1.  Driving directions, parking information and a map of the FDA campus is available at http://tinyurl.com/c7ddv2t.  

WHY:    The FDA is seeking the perspectives of people who are most impacted by this disease. Representatives from The Association will focus on the importance of weighing benefits vs. risks among other key topics in the drug development and approval process.

ALS, also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, military veterans are twice as likely to develop ALS as the general population.

HOW:    Anyone is welcome to attend this public hearing. The hearing can also be viewed via live webcast at https://collaboration.fda.gov/als/. 

CONTACTS:    Media inquiries can be sent to Carrie Munk, Chief Communications Officer, at cmunk@alsa-national.org or (202) 465-8800.

For general hearing-related inquiries, please email advocacy@alsa-national.org or call (877) 444-2572.

The Association will provide updates on Twitter throughout the hearing at @alspublicpolicy with the hash tag #alshearing.


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