advocacy

Powerful testimony from individuals with ALS, caregivers, advocates and others will inform the FDA’s approach to the review and approval of new ALS therapies

Posted on Monday, February 25, 2013 - 17:41, By: Amy Madsen
Update (Feb. 28, 2013): The daylong FDA ALS webinar has been archived and is now available for viewing on the FDA site.

The Feb. 25 FDA hearing about ALS can be followed live online; the public’s comments will inform the FDA’s actions on ALS drug development

Posted on Friday, February 22, 2013 - 05:00, By: Amy Madsen
The U.S. Food and Drug Administration (FDA) will host a public hearing Monday, Feb. 25, 2013, from 9 a.m. to 5 p.m. Eastern time, in Silver Spring, Md., to discuss the development of drugs for amyotrophic lateral sclerosis (ALS).

The Food and Drug Administration will hold a public hearing on amyotrophic lateral sclerosis (ALS) on Feb. 25

Posted on Wednesday, January 30, 2013 - 12:25, By: ALSN Staff
The Food and Drug Administration (FDA) will hold a public hearing on amyotrophic lateral sclerosis (ALS) on Feb. 25. It will be open to individuals and caregivers affected by ALS, ALS clinical research experts, and those with strong opinions about the needs of the ALS community.

Launched on World ALS Day, ALS TDI's ‘postcards’ share stories of people around the world who are working to stop ALS

Posted on Thursday, June 21, 2012 - 10:03, By: Other
On World ALS Day, June 21, 2012, the ALS Therapy Development Institute launched "ALS Postcards" as part of an international effort to raise awareness of amyotrophic lateral sclerosis (ALS) — known as motor neurone disease, or MND, in most parts of the world.

New training teaches individuals and families how to advocate for ALS research

Posted on Sunday, January 1, 2012 - 12:00, By: Freelance
Fight smart, not just hard. That’s the motto of Richard Bedlack, a world-renowned ALS research warrior who directs the ALS Clinic at Duke University, Durham, N.C. “Everyone I’ve ever met who is affected by ALS wants to roll up their sleeves and do something about it,” he says.
Posted on Thursday, July 1, 2010 - 15:06, By: ALSN Staff
MDA hosted three ALS-related webinars (Internet-based seminars) in May, in conjunction with National ALS Awareness Month. These webinars, which allow participants to direct questions to the featured experts, are archived on the MDA website.
Posted on Thursday, July 1, 2010 - 13:57, By: Miriam Davidson
“Advocacy is about access and empowerment,” said Annie Kennedy, MDA Vice President — Advocacy. “It’s about raising awareness of ALS and what the ALS community needs.”

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