Sunday, May 10 - Tuesday, May 12 ~ Washington, DC

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.

Join Us

MONDAY, MAY 11

CONFERENCE DAY 2

8:00 am – 4:00 pmRegistration Desk Open at the JW Marriott Hotel

8:00 am – 5:30 pmALS Marketplace Take a break from your meetings and visit the ALS Marketplace.

8:00 am – 9:00 amContinental Breakfast

9:15 am – 10:30 amThe 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 amRefreshment 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 pmGovernment 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 pmMeet the ResearchersVisit 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 pmLuncheon Relax over a plated lunch while catching up with old friends and new acquaintances.

S C H E D U L E O F E V E N T S

SUNDAY, MAY 10

9:00 am – 8:00 pmRegistration Desk Open at the JW Marriott Hotel

12:00 pm – 8:30 pmALS MarketplaceAttendees 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.

CONFERENCE OPENS

3:30 pm – 4:30 pmWelcome Remarks/Opening SessionJoin Advocates from all across the country to unite in an energetic convention-style session to open the 2015 conference.

4:30 pm – 4:45 pmRefreshment Break

4:45 pm – 5:30 pmPrep for the HillYou 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 pmMother’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 pmCandlelight Tribute at Freedom Plaza (across the street from the JW Marriott hotel)

9:30 pm – 11:00 pmIce Cream Social at the JW Marriott Hotel

TUESDAY, MAY 12

CONFERENCE DAY 3

7:30 am – 9:00 amCelebration of Excellence BreakfastThe 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 pmTransportation to and from Capitol Hill

9:00 am – 5:00 pm Meetings with Members of CongressShare your ALS story and let Congress know why more must be done in the fight against ALS!

Lunch (on your own)

5:30 pmLast Bus Departs from Capitol Hill

3:00 pm – 6:00 pmHospitality 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.

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 alsinfo@alsa-national.org or 1-800-782-4747.

PARTICIPATE IN ALS RESEARCH

j o i n t h e c h a l l e n g eSTRIKEOUT ALS!

CONFERENCE DAY 2 continued

2:30 pm – 4:30 pmChapter Strategy SessionsAdvocates 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 pmPublic Policy Question & Answer SessionDo 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.

Medicare’s 24-month

waiting period waived for

people with ALS

DOD ALS Research Program begins in

2007

Over $54 million in

funding for ALSRP

National ALS Registry

becomes law in 2008

Annual government

funding for ALS research is $80

million

Veterans Affairs makes ALS a service

connected disease

FDA holds first ever ALS

hearing in 2012

MODDERN Cures

introduced to incentivize

industry

Advocacy Department opens in DC

in 1998

Social Security issues

presumptive disability for

ALS

2014 ALS Ice Bucket Challenge goes viral

PEOPLE WITH ALS Making a Difference!

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

Hotel InformationJW MARRIOTT HOTEL1331 Pennsylvania Avenue, NW, Washington, DC 20004PHONE: 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.

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 request an ADA accessible hotel room, you must contact Mary Wisniewski at adaroom@alsa-national.org, 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 advocacy@alsa-national.org 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.

RegistrationTo 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.

For other participants, the 2015 conference has a $175 non-refundable 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 non-affiliate attendees is $350.

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.