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2019 National ALS Advocacy Conference

June 9 - 11, 2019

Every year, hundreds of ALS Advocates come to Washington, D.C., to learn about the latest ALS research, network, and visit Capitol Hill to share their stories with members of Congress and gain legislative victories. This is our opportunity to share the ALS story and let members of Congress know why the time to act is now!

The 2019 National ALS Advocacy Conference is an opportunity for the entire ALS community to unite in Washington, DC. This year’s conference will be held June 9 - 11, 2019. After a day and a half of meetings and training sessions, ALS Advocates from across the country will go to Capitol Hill to advocate with their Senators and Representatives.

Conference and hotel registration are now closed. Watch this page for updates and announcements – including speaker announcements, travel information, and tips to help you prepare for your conference experience.

If you have any questions about the conference, please contact the Advocacy Department at advocacy@alsa-national.org. Please put "Advocacy Conference" in the subject line.



Conference Overview

Similar to last year, 2019’s conference will focus on The ALS Association's mission. We will be highlighting the latest information and research from our three mission pillars: Advocacy, Research, and Care Services. Click here to see the full schedule of events for the 2019 National ALS Advocacy Conference. Click here to view the conference program.

Conference Schedule at a Glance

Sunday, June 9

  • Advocacy 101 for first time participants from 1:30 p.m. to 3:00 p.m.
  • Opening session starting at 3:30 p.m.
  • People with ALS & Caregiver Reception from 5:45 p.m. to 6:45 p.m.
  • Dinner and Program from 7:00 to 9:00 p.m. for all participants.


Monday, June 10

  • General session begins at 9:00 a.m. with programming until 4:00 p.m.
    • Featured speakers include legislative champions, U.S. Senator Bill Cassidy (R-LA) and former U.S. Senator Bill Nelson.
  • Chapter Strategy Sessions to prepare for your day on Capitol Hill from 4:00 p.m. to 5:30 p.m.

    Breakfast and lunch provided. Dinner is on your own. Experts in the Advocacy and Research departments will brief participants on critical issues as ALS Advocates prepare for a trip to Capitol Hill. Participants are also encouraged to visit the Research and Care Services Expo.


Tuesday, June 11

  • Hill visits scheduled from 9:00 a.m. to 5:00 p.m.
  • Hospitality room open from 3:00 p.m. to 6:00 p.m.

    Congressional visits will be scheduled for all participants. On Monday afternoon at the conference, ALS chapter executives will meet with participants from their areas to strategize for congressional visits. On Tuesday morning, breakfast will be provided starting at 7:30 a.m. and ALS Advocates will head to the Hill to educate and advocate with their members of Congress. Bus transportation to and from the Hill is available and participants may also use taxis, Uber, Lyft or metro. Association staff will assist with loading busses and travel to the Hill and will be on hand to answer any questions. The conference will conclude with refreshments in the hotel’s hospitality room where you can discuss your day with fellow advocates.

Webinar

Click here to view a recording of the pre-conference webinar held on June 5. The webinar presented logistical updates for the conference, as well as offer a preview of the ALS Association’s policy priorities.

Participate in ALS Research

The ALS Registry at the Centers for Disease Control (CDC)
People living with ALS will also have an opportunity to sign up for the ALS Registry at the CDC, if they have not already done so. We will again be providing an opportunity for those people with ALS who have enrolled in the National Registry to contribute saliva samples to the National ALS Biorepository. Appropriate accommodations will be made to maintain the privacy of any individual who wishes to contribute.

Meeting With Your Legislators

A highlight of the Advocacy Conference is spending Tuesday on Capitol Hill meeting with members of Congress. Chapter staff will be in touch with participants regarding your schedule for Tuesday. To help you prepare for meetings with your members of Congress, download the AdvocacyDay app and review the materials included in the “Bills” and “Documents” sections. The app provides an interactive experience that will help you to get the most out of your congressional visits.

The app is available in the App Store for iPhone or iPad and in the Google Play store for Android. Just search “AdvocacyDay” (all one word). You can also access a web version of the app at alsa.constituentvoice.net. Once you have downloaded the app, you will need to select “ALS Association” as your group and then login. Login for all participants is:

Username: firstnamelastname (all one word, lowercase)
Password: lastname (all lowercase)

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Registration

Registration is closed for the 2019 National ALS Advocacy Conference. We have reached maximum registration capacity.

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Hotel Information

The official conference room block at the J.W. Marriott is sold out. If your plans change and you need to cancel your J.W. Marriott hotel reservation, please contact advocacy@alsa-national.org first and not the hotel. You may cancel your reservation for no charge until 3 days before your arrival date.

We will once again be hosting the 2019 Advocacy Conference at the J.W. Marriott Hotel in Washington, DC. All conference activities, except for Capitol Hill meetings, will be held at the J.W. Marriott.

J.W. Marriott Hotel
1331 Pennsylvania Avenue, NW
Washington, DC 20004
Phone: 202-393-2000

Other Hotels Where Advocates Are Staying: An accessible shuttle bus will run between the J.W. Marriott and the other official Conference hotels throughout the Conference.

The Willard Hotel
1401 Pennsylvania Avenue, NW
Washington, DC 20004

Washington Marriott at Metro Center
775 12th Street NW
Washington, DC 20005

Hilton Garden Inn Washington DC Downtown
815 14th Street N.W.
Washington, DC 20005

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ADA Rooms

ADA room assignments have been finalized. If you have any questions, please e-mail adaroom@alsa-national.org.

ADA Room Cancellation:

  • It is understood that plans may change. If a person with ALS has been assigned an ADA room but is unable to attend, please notify The ALS Association immediately so that we may cancel your reservation and re-assign the ADA room to another person with ALS who would like to attend. If you need to cancel your ADA room, please e-mail adaroom@alsa-national.org. You may cancel your reservation for no charge until 3 days before your arrival date.

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How to Rent Durable Medical Equipment

We recommend that attendees rent their DME no later than May 15. Advocates may want to rent a wheelchair, even if they do not currently use one, as the day on the Hill involves a lot of walking.

Please be advised hotels are not equipped to provide Durable Medical Equipment (DME). In addition, DME companies that provide equipment for conferences may not be open on the weekends. Participants should plan for DME equipment well in advance of the travel dates.

Participants may rent from any company however we have been in contact with two local DME companies who have the capacity to serve people attending our conference. They are:

Express Mobility Services
3220 N St., N.W. #285, Washington, DC 20007
877-721-3129
http://www.expressmobilityservices.com

The Medical House
440 S Washington St, Falls Church, VA 22046
703-214-6706
https://www.mymedicalhouse.com

Cost: As in past years, attendees will be expected to pay the full rental cost for any durable medical equipment.

Rental/Delivery: Rental equipment, including chairs for the shower and IV poles, should be rented and delivered to the hotel.

Hoyer Lift: If you are renting a Hoyer Lift, you must send an email to adaroom@alsa-national.org, so the hotel can be made aware in advance of your stay and can confirm the equipment can fit in the ADA room.

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Support For Participants Who Require CNA or LPN

Lifematters Care Services (Certified Nursing Assistant/Licensed Practical Nurse)

The Association is partnering with Lifematters to offer licensed practical nurse (LPN) and certified nursing assistant (CNA) support to conference attendees who require it. There will be no charge to recipients for services provided by Lifematters.

Please Note: People who require services will need to complete: 1) a registration care form and 2) a service agreement, which will provide the required information and acknowledgements to assign the appropriate LPN or CNA.

Completed form needs to be received BY May 28th, 2019 in order to be eligible for services. To obtain the necessary forms or for more information on this service, please contact Markeya Martin at mmartin@alsa-national.org.

Founded in 2004, Lifematters is the largest employer-based home care and care management company in the Washington, D.C., metropolitan area and is one of a few home care companies that provides full-service capabilities in home care. A list of services can be seen below.

Certified Nursing Assistant (CNA) Care – Lifematters CNAs can provide the following services:

  • Bath/shower/sponge bath/bed bath
  • Dressing
  • Grooming
  • Shaving (electric razor only; no blades)
  • Oral hygiene
  • Nail care - clean and file only (no clipping)
  • Lotion to skin
  • Feeding
  • Toileting/incontinence care
  • Catheter care (emptying bag only)
  • Ostomy care (emptying bag only)
  • Mobility - cane, walker, wheelchair
  • Transferring/positioning
  • R.O.M. (range of motion) exercises
  • Medication reminders from pill box set up by a family member or nurse
  • Taking vital signs
  • Recording vital signs and glucose levels (for record keeping only; cannot assess or change plan of care)
  • Fit on oxygen, bipap, and cpap masks (cannot touch controls on these machines)

Licensed Practical Nurse (LPN) Care – Lifematters LPNs can provide the following skilled nursing services:

  • Monitoring vital signs, including blood pressure
  • Glucose monitoring; Diabetes management and care
  • Wound care & Dressing changes
  • Ostomy/colostomy care
  • Catheter care
  • Ventilator and tracheotomy care
  • Eye drops
  • Pain patches
  • Assistance with Bipap/cpap controls; Oxygen controls
  • Medication management
  • Preventing pressure ulcers
  • Does not include: IV therapy, infusion therapy, PT, OT, ST, or crushing/cutting certain medications.

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Travel Information

Transportation During the Conference

Hotel Shuttle
A handicap accessible shuttle bus will run between the J.W. Marriott and the other official Conference hotels throughout the Conference. Shuttles will run during the following times:

  • Sunday, June 9: 11:00 a.m. - 9:30 p.m.
  • Monday, June 10: 7:00 a.m. - 6:30 p.m.
  • Tuesday, June 11: 7:00 a.m. - 6:30 p.m.

For more information about the shuttle or to schedule a pick-up, please contact Marcia Ratti at 240-876-2410. Please call 15 minutes prior to your intended pick-up time. Additional information about the shuttle will be available at the Advocacy Conference registration desk.

To/From Capitol Hill
Bus transportation will be provided from the J.W. Marriott to Capitol Hill, starting at approximately 8:30 a.m. on Tuesday, June 11. Buses will run throughout the day. THE LAST BUS WILL LEAVE THE HILL AT 5:30 PM. If you have a meeting before 8:30 AM or after 5:00 PM, you must notify Marcia Ratti at 240-876-2410 in advance so that other transportation arrangements can be made.

The Metro Rail system has stops accessible to both the House and Senate sides of Capitol Hill and the hotel. The closest Metro stop to the Senate Office Buildings is Union Station (Red line) and the closest Metro stop to the House Office Buildings is Capitol South (Blue and Orange lines). The closest Metro stop to JW Marriott is Metro Center (Blue, Orange and Red lines).

Parking
For Capitol Hill meetings on Tuesday, June 11, parking is available at the Union Station Parking Garage on 30 Massachusetts Avenue, NE. The garage is open 24 hours a day. The garage has two entrances; the most convenient to the Senate Office Buildings is on Massachusetts Ave, NE, by Columbus Circle. Passenger vehicles higher than 7 feet 5 inches cannot be accommodated by the garage.

There is limited street parking around Capitol Hill.

 Airline Information:

Delta Airlines:
Book online at www.delta.com and enter NMS89 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: NMS89. 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 ZGF2704116 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: 704116Z Code: ZGF2. 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
DC Yellow Cab has some accessible taxis that are designed for standard-sized power wheelchairs and standard-sized scooters. They will not accommodate an over-sized wheelchair, such as one with extra adaptive equipment attached. Passengers can request an accessible taxi by calling 202-544-1212.

UberX: Approximately $14-17 one-way
Lyft: Approximately $14 one-way
Super Shuttle: 10% discount for Conference attendees through online booking only

  • Multi-stop shared van approximately $14.60* per person one-way, plus gratuity
  • Premium sedan nonstop for 1-3 persons $48.10 for group one-way, plus gratuity
  • Premium SUV nonstop for 1-5 persons $66.10 for group one-way, plus gratuity

*discount available through link https://www.supershuttle.com/default.aspx?GC=N8P6T&HideGC=Y


From Baltimore-Washington International Airport(BWI):

Taxi: Approximately $80-90 one-way
UberX: Approximately $50-66 one-way
Lyft: Approximately $50 one-way
Super Shuttle: 10% discount for Conference attendees through online booking only

  • Multi-stop shared van approximately $38.70* per person one-way, plus gratuity
  • Premium sedan nonstop for 1-3 persons $90.00 for group one-way, plus gratuity
  • Premium SUV nonstop for 1-5 persons $107.10 for group one-way, plus gratuity

*discount available through link https://www.supershuttle.com/default.aspx?GC=N8P6T&HideGC=Y


From Washington Dulles International Airport(IAD):

Taxi: Approximately $62-85 one-way
UberX: Approximately $45-57 one-way
Lyft: Approximately $44 one-way
Super Shuttle: 10% discount for Conference attendees through online booking only

  • Multi-stop shared van approximately $27.10* per person one-way, plus gratuity
  • Premium sedan nonstop for 1-3 persons $93.10 for group one-way, plus gratuity
  • Premium SUV nonstop for 1-5 persons $111.10 for group one-way, plus gratuity

*discount available through link https://www.supershuttle.com/default.aspx?GC=N8P6T&HideGC=Y

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2018 National Advocacy Conference - Washington DC

2018 Collins family  Rep Jody Hice

Left to Right: Sarah Embro ALS of GA Executive Director, Rep. Jody Hice and the Collins Family

2018 Advocacy 3

Left to right: Juanita Pharr, Nicole Yarab, Rep. Buddy Carter, Scott Gundrum and Lee Glenn

Isakson w Lee Glenn Scott Gundrum Nicole Yarab

Left to right: Scott Gundrum, Nicole Yarab, Lee Glenn and US Senator Johnny Isakson


2017 Georgia ALS Advocacy Day

2017 Advocacy 2

2017 ALS Advocacy 3

2017 ALS Advocacy 1

2016 Georgia ALS Advocacy Day

Thanks to our staff, volunteers and ALS advocates for making the
2016 Georgia ALS Advocacy Day such a success! 

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Click here to see more photos from the
2016 Georgia ALS Advocacy Day!

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2015 Georgia ALS Advocacy Day

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2014 Georgia ALS Advocacy Day

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GA Advocacy Day 2014_2      Georgia Chapter Senate photo

National ALS Advocacy Day

 May 7th-9th, 2014

GA Delegation

Natl Advocacy Day 10     Natl Advocacy Day 11

Natl Advocacy Day 4     Natl Advocacy Day 5

Natl Advocacy Day 6     Natl Advocacy Day 9

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