The ALS Association

Ice Bucket Challenge Progress

2018 National ALS Advocacy Conference

May 13 - 15, 2018

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 2018 National ALS Advocacy Conference is an opportunity for the entire ALS community to unite in Washington, DC. This year’s conference will be held May 13 - 15, 2018. After a day and a half of meetings and training sessions, ALS Advocates from across the country will take to Capitol Hill for conversations with their legislators.

Conference and hotel registration is now open! 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 or toll-free at 1-877-444-ALSA.


Conference Overview

This year’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. A more detailed schedule will be available in the coming weeks, but the overview below will help you plan your travel now.

Conference Schedule at a Glance

Sunday, May 13
    • Advocacy 101 at 2:00 p.m. for new participants.
    • Opening session from 4:00 to 4:45 p.m.
    • Dinner from 7:00 to 9:00 p.m. for all participants.

The conference will open with welcoming remarks and updates on ALS policy priorities. There will be a general session presentation on Care Services followed by a Patient and Caregiver Reception. The evening will end with a dinner for all.

Monday, May 14
    • Meeting begins at 9:00 a.m. with programming until 3:30 p.m.
    • Chapter Strategy Sessions from 4:00 to 5:30 p.m.

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

Tuesday, May 15
    • Hill visit scheduled from 8:30 a.m. to 5:00 p.m.

Breakfast and bus transportation provided. ALS Advocates head to the Hill to educate and advocate with their members of Congress. Transportation to and from the Hill is provided. The conference will conclude with a hospitality room where you can discuss your day with fellow advocates.

Webinar

To help participants prepare for Advocacy Day, travel to Washington, D.C., and visits to Capitol Hill, a webinar will be held in April. More information will be emailed to all participants, but you can also check back here.

New in 2018

  • Youth Programming
    For the past two years, The ALS Association has supported research conducted by Dr. Melinda Kavanaugh, a professor at the University of Wisconsin-Milwaukee. Dr. Kavanaugh has interviewed youths about what it is like to live with and care for a family member living with ALS. Most of the 60+ youth interviewed stated they had not received training or guidance for the care they provide, despite being very involved in tasks including fall prevention, bathing, feeding, and toileting. With no formal training, they expressed feelings of stress and a lack of understanding of what they were doing. Click HERE for more information.

  • Share Your Story
    The ALS Association communications department will be recording personal stories of our advocates throughout the conference. We want to hear from people personally impacted by ALS, including people living with ALS, caregivers, family members, and researchers.

    If you would be interested in sharing your story or getting more information on sharing your story with us, please click here to fill out this form and our communications staff will be in touch.

TOP


Registration

To attend the 2018 National ALS Advocacy Conference, please register online HERE. If you do not have Internet access, you may register by calling the Advocacy department at 1-877-444-ALSA.

Conference registration fees are waived for people with ALS and for one caregiver traveling with them to the conference.

The 2018 National ALS Advocacy Conference has a reduced, non-refundable registration fee of $175 for additional caregiver(s), family, friends, supporters, or staff affiliated with one of our ALS Chapters or The ALS Association. This fee covers a small portion of conference costs, including meals, transportation to Capitol Hill, and briefing materials. Registration fees for children ages 3 – 16 are $25. The fee for non-affiliate attendees is $350.

In order to receive reduced registration rates, please register no later than Friday, April 13, 2018. After April 13, the registration rates double.

TOP


Hotel Information

We will once again be hosting the 2018 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

Single/double occupancy rate is $299 plus tax per night; $319 plus tax for triple occupancy and $339 plus tax for quadruple occupancy. A maximum of four guests are permitted per room.

A limited room block is available until April 13, 2018, or until the group block is sold-out, whichever comes first. In order to receive the reduced conference room rate, you must reserve your hotel room by 5 p.m. on Friday, April 13, 2018. When you register for the conference, you will be provided with a direct link to the J.W. Marriott reservations website. Please note that reduced conference room rates are only available for those who have already registered to attend the conference.

Reserve your room today!

TOP


ADA Rooms

There are a limited number of ADA certified rooms and for that reason an ADA room is not guaranteed. Specific ADA room assignments are based on the needs of the person living with ALS and the availability of rooms that meet those specifications. Room assignment are not made by the hotel but will be made by The ALS Association staff after the participant has completed a survey specifying their needs. Click HERE for more information.

TOP


Meeting your Medical and Equipment Needs

How to Rent Durable Medical Equipment

Hotels are not equipped to provide Durable Medical Equipment (DME). In addition, DME companies that provide equipment for conferences are not open on the weekends. Participants must plan for DME equipment well in advance of the travel dates. We recommend renting your DME equipment no later than April 20. Rental equipment, including chairs for the shower and IV poles, should be rented and delivered to the hotel. 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.

Participants may rent from any company. Frederick Medical Supplies has been serving the DC/MD/VA Chapter for their community’s needs. Frederick Medical Supplies is dedicated to providing a caring, compassionate, and professional experience for their patients, while providing solutions relevant to their specific needs and goals. Their experienced staff is thoroughly trained, certified, and committed to providing the most appropriate devices for each individual need.

If you plan to order from Frederick Medical Supplies, please place your order no later than Friday, May 4.

Click HERE for some sample pricing to be used as a reference. Should you choose to rent from Frederick Medical Supplies, please let them know that you will be part of the ALS Association Advocacy Conference 2018. Please contact Frederick Medical Supplies for additional information and rental needs.

Please note: The cost of renting equipment is the responsibility of the individual renting the equipment.

Frederick Medical Supplies
www.frederickmedsupplies.com
179 Thomas Johnson Drive, Suite B
Frederick MD 21702
Phone: 301-378-2266
Fax: 301-378-2204


Home Health Nurses

We are pleased to announce that The ALS Association has partnered again with Lifematters, a home health nursing agency, to provide services for our ALS advocates during their attendance at our upcoming conference. If you may need, or know someone who may need, a Certified Nursing Assistant (CNA) or a Licensed Practical Nurse (LPN) for any time at the conference, you may request one by completing and returning the Professional Care Registration and Client Agreement forms.

Completed forms should be returned to Tania Ballantine at tballantine@alsa-national.org or faxed to 202-464-8869 no later than Tuesday, May 1, 2018.

Please note that the National Office will be paying for services rendered for all authorized patients. The patient/family will have no payment responsibility.

Please direct any questions to Tania Ballantine at tballantine@alsa-national.org or 202-464-8633.

TOP


Travel Information

 Airline Information:

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
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 http://www.supershuttle.com/default.aspx?GC=8B42W


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 http://www.supershuttle.com/default.aspx?GC=8B42W


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 http://www.supershuttle.com/default.aspx?GC=8B42W

TOP


Participate in ALS Research

Research at NIH
The ALS Association is pleased to once again offer conference attendees an opportunity to participate in an exciting research project conducted by the National Institutes of Health (NIH). On Monday, May 14 from 9:00 am - 3:00 pm, people with ALS may provide blood samples and complete a questionnaire as part of their study.

The purpose of the study is to learn more about the causes of the disease – not to test a potential treatment. If you would like to participate by giving a blood sample and meeting with staff to complete a questionnaire, please contact the Care Services department at alsinfo@alsa-national.org or 1-800-782-4747.

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. There will also be more information about the new National ALS Biorepository at the Registry. We will not be taking samples for the biorepository at the Conference but can provide you information on how to sign up.

TOP


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. More information will be available prior to the conference to help you research and prepare for your meetings.

TOP

 

 


Archived Conference Report and Photographs

2017  |  2016  |  2015  |  2014  |  2013  |  2012  |  2011  |  2010  |  2009

Powered by Blackbaud
nonprofit software