The ALS Association

Ice Bucket Challenge Progress


Download the Invitation

Please join us in Washington, D.C. on July 12, 2018 to share your voice with the Food and Drug Administration (FDA) and pharmaceutical industry! The purpose of this workshop is to provide targeted feedback and information from the ALS Community to further inform the FDA’s Draft Guidance on ALS Drug Development. All ALS stakeholders are invited to attend. The event will be live streamed and recorded for those who cannot join us in person.


Workshop Overview*

People with ALS, advocates, academics, clinicians, and industry panelists will participate in moderated discussions that will explore key topics in ALS drug development such as:

  • Benefit risk considerations
  • Study design, natural history, recruitment, and retention
  • Outcome measures, endpoints, and accelerated approval considerations

Audience and online participation will be encouraged.

Lunch will be provided. For any dietary needs, please contact Paula Fischer at pfischer@alsa-national.org.

*Once the agenda and speakers are finalized, this section will be updated.

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Live Stream and Recording

The ALS Community workshop will be live streamed and recorded. Watch the live stream on this page or tune into our Facebook or YouTube pages.

If you plan on attending the (online) live stream event, please register here: https://thealsassociation.formstack.com/forms/signup

General Procedure

The ALS Association will accept questions and comments from in-person and online Workshop attendees. We encourage online attendees to submit questions in advance and during the live event by sending email messages to our designated Workshop email inbox: ALSFDAworkshop@alsa-national.org.

The ALS Association will review all questions and then elevate questions to the Workshop moderator.

While we may not be able to answer every question submitted, our priority is to make sure every voice is heard. You can ensure your voice is heard by participating in the conversation on social media using the hashtag #ALSFDA.

Two weeks after the Workshop, we will compile any additional questions and comments from the ALS community and send them all to FDA leadership.

Question Submission

The ALS Association invites attendees to submit questions and comments by email prior to and during the Workshop. Please note that emailed questions will take top priority.

  • Before and during the Workshop, ALS community members are encouraged to email ALSFDAworkshop@alsa-national.org with their questions.
  • We will not be able to address every question during the Workshop, but will respond to all ALS community members’ emails in the coming weeks.

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Registration

We extended the in-person registration deadline! To attend the ALS Community Workshop, please rsvp to Paula Fischer at pfischer@alsa-national.org by Friday, June 15, 2018, which is required. In your rsvp, please include your first and last name, address, phone number, chapter, and affiliation.

Attending the Workshop is free.

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Travel Information

Hotel information:

We are hosting the event at the Washington Plaza Hotel in downtown Washington, D.C.

Washington Plaza Hotel
10 Thomas Circle NW
Washington, D.C. 20005
Phone: 202-842-1300

We are in the process of securing rooms at nearby hotels and information will be posted soon.

For ADA room information, please contact Paula Fischer at pfischer@alsa-national.org.



Airline information:

Meeting discounts are available through Delta and United:

Delta Airlines: Book online at www.delta.com and enter NMQE2 in the Meeting Code box provided when using the Advanced Search for flights. Reservations may also be made by calling Delta’s Meeting Desk at 800-328-1111 – refer to Meeting Code: NMQE2. Please note there is a direct ticketing fee for booking over the phone with the meeting desk.

United Airlines: Book online at www.united.com and enter ZYVD979144 in the Promotion and Certificate box provided when using the All Search Options for flights. Reservations may also be made by calling United’s Meeting Desk at 800-426-1122 – refer to Agreement Code 979144 Z Code: ZYVD. Please note there is a direct ticketing fee for booking over the phone with the meeting desk.



Ground Transportation:

From Ronald Reagan Washington National Airport (DCA)
Taxi: Approximately $18-49 one-way
UberX: Approximately $14-17 one-way
Lyft: Approximately $14 one-way

From Baltimore-Washington International Airport (BWI)
Taxi: Approximately $80-90 one-way
UberX: Approximately $50-66 one-way
Lyft: Approximately $50 one-way

From Washington Dulles International Airport (IAD)
Taxi: Approximately $62-85 one-way
UberX: Approximately $45-57 one-way
Lyft: Approximately $44 one-way

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