1. health and fitness
2. disease

Sunday, May 10 - Tuesday, May 12 ~ Washington, DC
Join Us
Dear ALS Advocate:
In 2014, the ALS Ice Bucket Challenge forever changed the
fight against the disease. Who will ever forget the images
we saw each day last summer of people being soaked
with ice water all in the name of ALS? Everywhere you
looked, people were talking about ALS! Everyone from
Oprah to Derek Jeter, Leonardo DiCaprio to Taylor Swift and
everyone in between all over the world took part. The Ice
Bucket Challenge was one of the year’s top five searched
terms on Google and was one of the most trending topics
on Facebook and Twitter. It quite simply was everywhere.
People everywhere joined the fight – our fight – against this
horrific disease thanks to three people with ALS who helped
make the challenge go viral because they wanted to make a
difference. And they did!
The success of the Ice Bucket Challenge also presents us
with new opportunities to make a difference in Washington,
DC. That’s because the level of awareness of ALS that
exists on Capitol Hill today has never been greater. And we
must seize on this increased visibility in order to generate
continued funding for ALS research and support for policies
that can enhance the lives of people with ALS. This is
absolutely critical. While the Ice Bucket Challenge raised
significant funding for ALS, more must be done to find
a treatment. The United States government remains the
single largest source of funding for ALS research and health
care in the world. And we need to make sure Members
of Congress know that the fight against ALS is not over
because of the success of the Ice Bucket Challenge.
It also is vital that we take advantage of this increased
visibility because we still face significant obstacles in
Washington. Partisan politics and tight budgets continue to
present challenges to our success. Moreover, some of our
most influential champions have retired from Congress or
recently passed away. As a result, we need to identify new
champions and strengthen our relationships with existing
supporters in addition to educating the more than 70 newly
elected Members of Congress who won their elections last
November. Yes, we have more work to do!
Therefore, The ALS Association invites you to join us as the
entire ALS community unites in Washington, DC May 10-12,
2015 for the National ALS Advocacy Day and Public Policy
Conference. This is our opportunity to share the ALS story,
to let Members of Congress know the true nature of the
disease and why more must be done as soon as possible.
Just as Pete Frates, Pat Quinn, and Anthony Senerchia
made a difference with the Ice Bucket Challenge, we too
can challenge Congress to make a difference in the fight
against ALS. So please join us in Washington, DC this
May and help bring an end to ALS.
SCHEDULE OF EVENTS
SUNDAY, MAY 10
9:00 am – 8:00 pm
Registration Desk Open
at the JW Marriott Hotel
12:00 pm – 8:30 pm
ALS Marketplace
Attendees can visit The ALS Association Marketplace and
see an array of exhibits to learn about products and services
designed for people with ALS and their families which are
provided by sponsors of the Public Policy Conference.
CONF ER ENCE OPEN S
3:30 pm – 4:30 pm
Welcome Remarks/Opening Session
Join Advocates from all across the country to unite in
an energetic convention-style session to open the 2015
conference.
4:30 pm – 4:45 pm
Refreshment Break
4:45 pm – 5:30 pm
Prep for the Hill
You have the ability to make a difference! Public Policy
Department staff will review The ALS Association’s 2015 public
policy priorities and provide advocates with the tools and
information they need to deliver a loud and clear message on
Capitol Hill.
6:30 pm – 8:15 pm
Mother’s Day BBQ
The ALS Association pays tribute to Mothers, who play such a
crucial role in every family that has been touched by ALS.
8:30 pm – 9:00 pm
Candlelight Tribute at Freedom Plaza
(across the street from the JW Marriott hotel)
9:30 pm – 11:00 pm
Ice Cream Social at the JW Marriott Hotel
MONDAY, MAY 11
CONFER ENCE DAY 2
8:00 am – 4:00 pm
Registration Desk Open at the JW Marriott Hotel
8:00 am – 5:30 pm
ALS Marketplace
Take a break from your meetings and visit the ALS Marketplace.
8:00 am – 9:00 am
Continental Breakfast
9:15 am – 10:30 am
The State of ALS Research
The Association’s Chief Scientist, Dr. Lucie Bruijn, will share the
latest news about The Association’s TREAT ALS program and
other promising developments in clinical trials and ALS research,
including how the Ice Bucket Challenge is advancing ALS research.
10:30 am – 11:00 am
Refreshment Break
During the break, check out the ALS Marketplace where you
can visit The Association’s research booth and the National ALS
Registry booth among other exhibitors.
11:00 am – 12:30 pm
Government ALS Research
Join us for this plenary session to learn how government programs,
such as the National ALS Registry and the ALS Research Program
at the Department of Defense, are advancing the search for the
cause, treatment and cure for ALS.
12:30 pm – 1:15 pm
Meet the Researchers
Visit The ALS Association Research Booth to meet with our Chief
Scientist and some of the young investigators The ALS Association
is supporting as they conduct the most promising ALS Research.
1:15 pm – 2:30 pm
Luncheon
Relax over a plated lunch while catching up with old friends and
new acquaintances.
join the challenge
ST R IKE O U T A L S !
CONFER ENCE DAY 2 continued
2:30 pm – 4:30 pm
Chapter Strategy Sessions
Advocates will gather with their Chapters in breakout rooms to review
their strategy for Capitol Hill. Delegations will have time to go over
their schedule and conduct a practice meeting so every advocate
knows the role they will play in their meetings with Members of
Congress and their staff.
4:45 pm – 5:45 pm
Public Policy Question & Answer Session
Do you have last minute questions about your meetings on the Hill
on Tuesday? Use this opportunity to speak one-on-one with The
Association’s Public Policy staff to have your questions answered.
TUESDAY, MAY
12
CONF ERENCE DAY 3
7:30 am – 9:00 am
Celebration of Excellence Breakfast
The ALS Association will recognize advocates, Members of
Congress and other leaders who have championed the fight against
ALS. A full breakfast is served during the awards presentation
before advocates head to Capitol Hill for their meetings.
8:30 am – 5:30 pm
Transportation to and from Capitol Hill
9:00 am – 5:00 pm
Meetings with Members of Congress
Share your ALS story and let Congress know why more must be
done in the fight against ALS!
Lunch (on your own)
5:30 pm
Last Bus Departs from Capitol Hill
3:00 pm – 6:00 pm
Hospitality Room open at the JW Marriott Hotel
Drop off your Congressional meeting reports and discuss your day
on Capitol Hill with fellow advocates. Refreshments will be served.
PARTICIPATE IN
ALS RESEARCH
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 11, at
8:00 am, 10:00 am and noon,
people with ALS may provide
blood samples and complete
a questionnaire as part of the
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 scientists to complete a
questionnaire, please contact
the Care Services Department
at [email protected] or
1-800-782-4747.
In 2014, tens of millions of people around the world participated
in the ALS Ice Bucket Challenge, generating unprecedented awareness
and support for the fight against this horrific disease. They joined a
community whose advocacy in Washington, DC truly has made a difference.
Through the active participation of people with ALS and their families, the
ALS community has realized significant accomplishments in our nation’s
capital. By continuing to share the ALS story and put a face on this disease,
people with ALS and their advocates can build on the success of the Ice
Bucket Challenge to make an even bigger difference and find a treatment
for this disease. Join the fight. Become an ALS Advocate today!
www.alsa.org/advocacy
Social Security
issues
presumptive
disability for
ALS
Advocacy
Department
opens in DC
in 1998
Over $54
million in
funding for
ALSRP
DOD ALS
Research
Program
begins in
2007
Annual
government
funding for ALS
research is $80
million
FDA holds
first ever ALS
hearing in
2012
MODDERN
Cures
introduced to
incentivize
industry
Medicare’s
24-month
waiting period
waived for
people with ALS
National ALS
Registry
becomes law
in 2008
Veterans
Affairs makes
ALS a service
connected
disease
2014 ALS
Ice Bucket
Challenge
goes viral
PEOPLE WITH ALS Making a Difference!
Registration
To attend the 2015 National ALS Advocacy Day and Public Policy
Conference, please register online at www.ALSA.org/advocacy/
advocacy-day/. If you do not have internet access, you may register
by calling the Public Policy 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.
Hotel Information
JW MARRIOTT HOTEL
1331 Pennsylvania Avenue, NW, Washington, DC 20004
PHONE: 202-393-2000
(Headquarters Hotel - Registration and Sessions)
Single/double occupancy rate is $289.00 + tax per night;
$319.00 + tax for triple occupancy; $349.00 + tax for quadruple
occupancy; maximum of four guests per room.
For other participants, the 2015 conference has a $175 nonrefundable registration fee for attendees who are affiliated with
The ALS Association, an ALS Association Chapter or other affiliated
organization. This fee covers a small portion of conference costs,
including meals, transportation to Capitol Hill and briefing materials.
Registration fees for children age 3-16 are $25. The fee for nonaffiliate attendees is $350.
In order to receive the reduced conference room rate, you
must reserve your hotel room by April 10, 2015. When you
register for the conference, you will be provided with a direct link
to JW Marriott reservations. NOTE: Reduced conference room rates
are only available for those who already have registered to attend
the conference.
In order to receive reduced registration rates, please
register no later than April 10, 2015. Fees for registrations
submitted after April 10: $350 for affiliates, $700 for non-affiliates,
and $50 for children age 3-16.
In order to request an ADA accessible hotel room, you must
contact Mary Wisniewski at [email protected], or by
phone at 202-746-0043. For all additional questions about hotel
reservations or transportation, please contact Mary Wisniewski.
If you have additional questions about the conference, please
contact the Public Policy Department at
[email protected] or toll-free at 1-877-444-ALSA.
Activities outside of the hotel can easily be reached by using
the nearest Metro station to the JW Marriott Hotel: Metro Center
(Blue/Silver/Orange/Red lines). Maps of the Metrorail system are
available on-line at www.wmata.com.