Newport Beach Nonprofit Fundraising - PDF

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					The ALS Association




             January 22-24, 2009
 Marriott Newport Beach Hotel  Newport Beach, California
2
               The ALS Association 2009 ANNUAL CONFERENCE At-A-Glance
TUESDAY, JANUARY 20                     ACTIVITY                           SPEAKER              OPTION 1                          OPTION 2                          OPTION 3
12:00 PM - 1:00 PM    Walk Networking Lunch
1:00 PM - 5:00 PM     WALK TRACK                                                     #301A Walk 101 (Part 1)

WEDNESDAY, JANUARY 21                   ACTIVITY                           SPEAKER              OPTION 1                          OPTION 2                          OPTION 3
7:30 AM - 8:30 AM     Continental Breakfast
8:30 AM - 12:00 PM    WALK TRACK                                                     #301B Walk 101 (Part 2)
12:00 PM - 1:00 PM    Walk Networking Lunch
1:00 PM - 5:00 PM     WALK TRACK                                                     #302A Convio 101 (Part 1)
       7:00 PM        Dinner ( Mock Team Captain Walk Kick-Off Luncheon)
THURSDAY, JANUARY 22                    ACTIVITY                           SPEAKER              OPTION 1                          OPTION 2                          OPTION 3
7:30 AM - 8:30 AM     Continental Breakfast - All Tracks
8:30 AM - 9:30 AM     LEADERSHIP TRACK                                               ExEcutivE DirEctor Program #101A Executive Director Program Welcome
8:30 AM - 10:30 AM    CLINICAL TRACK                                                 #201 Basics (A - B)               #202 Nutrition (A - C)             #203 Cognition (A - C)
8:30 AM - 12:00 PM    WALK TRACK                                                     #302B Convio 101 (Part 2)
9:30 AM - 12:00 PM    LEADERSHIP TRACK                                               ExEcutivE DirEctor Program #101B Lessons I’ve Learned
10:30 AM - 11:00 AM   Break - Posters & Exhibits
11:00 AM - 12:00 PM   CLINICAL TRACK                                                 #201 Basics (C)                   #202 Nutrition (D)                 #204 Speech/Language (A)
12:00 PM - 1:15 PM    Combined Luncheon - All Tracks
1:30 PM - 3:30 PM     LEADERSHIP TRACK & WALK TRACK                                  ExEcutivE DirEctor Program #101C and #303 It’s a Corporate World
1:30 PM - 2:45 PM     CLINICAL TRACK                                                 #201 Basics (D - E)               #205 Telemedicine and the          #204 Speech/Language (B)
                                                                                                                       Multidisciplinary Care Setting
2:45 PM - 2:55 PM     Break - Clinical Track
2:55 PM - 5:00 PM     CLINICAL TRACK                                                 #206 DISCIPLINE SPECIFIC BREAK OUTS
3:30 PM - 3:45 PM     Break - Leadership & Walk
3:45 PM - 4:30 PM     LEADERSHIP TRACK                                               ExEcutivE DirEctor Program #101D Role of the Executive Director in Guiding a Nonprofit Board
3:45 PM - 5:00 PM     WALK TRACK                                                     #304 Overcoming Obstacles to Drive Revenue within the Walk Program
4:30 PM - 5:00 PM     LEADERSHIP TRACK                                               #102 New Executive Director Orientation FYE 2009
5:30 PM - 7:00 PM     Patient Services Reception
Free Evening          All Attendees




                      ALL ATTENDEES                        LEADERSHIP TRACK              CLINICAL TRACK                            WALK TO DEFEAT ALS™
                                                                                                                                                                                                              3
                                                                                                                  CONFERENCE At-A-Glance Cont.
FRIDAY, JANUARY 23                        ACTIVITY                      SPEAKER                            OPTION 1                             OPTION 2                                 OPTION 3
7:30 AM - 8:00 AM     Continental Breakfast - All Tracks
8:15 AM - 9:30 AM     CONFERENCE KICK-OFF & WELCOME          Welcome by Allen L. Finkelstein, Chair, National Board of Trustees, The ALS Association
                                                             Keynote Speaker: Dan Migala, Publisher, The Migala Report, Author, “Dugout Wisdom”
                                                             “Hall of Fame Lessons in Hope” Turn to page 20 for full speaker bio
9:30 AM - 10:00 AM    Break - Posters & Exhibits
10:00 AM - 10:30 AM   LEADERSHIP TRACK & WALK TRACK          Leadership Featured Speaker:       #103 & #305 Leading the Successful Nonprofit
                                                             Jeff Wilcox
10:00 AM - 12:00 PM   CLINICAL TRACK                                                            #207 Creative Supports (A - C)       #208 Assistive Technology (A - B)     #209 Children & Families (A - B)

10:45 AM - 12:00 PM   LEADERSHIP TRACK                                                          #104A Financial Responsibilities of a Nonprofit Board                      #105 Five Virtues of Marketing
                                                                                                PrEsiDEnts’ rounDtablE
10:45 AM - 12:00 PM   WALK TRACK                                                                #306 Stop/Ask/Listen: Proven Techniques for Communicating and Selling the Walk Program
12:00 PM - 1:30 PM    Combined Luncheon - All Tracks         Featured Guest Speaker: Janet Ginn, CEO and President, Heifer Foundation
                                                             “Become a Beacon of Change” Turn to page 20 for full speaker bio
1:30 PM - 2:30 PM     CLINICAL TRACK                                                            #207 Creative Supports (D)

1:30 PM - 3:30 PM     LEADERSHIP TRACK                                                          #104B Succession Planning: Creating a Continuity of Leadership             #106 Mining Your Database to
                                                                                                PrEsiDEnts’ rounDtablE                                                    Increase Corporate Support
                                                                                                                                                                           (Combined with Walk Track)
1:30 PM - 3:30 PM     CLINICAL TRACK                                                            #208 Assistive Technology (C - D) #209 Children & Families (C - D)
1:30 PM - 3:30 PM     WALK TRACK                                                                #307 Mining Your Database to Increase Corporate Support (Combined with Leadership Track)
2:30 PM - 3:30 PM     CLINICAL TRACK                                                                                                                                       #210 Respiratory (A )
3:30 PM - 3:45 PM     Break
3:45 PM - 5:00 PM     LEADERSHIP TRACK                                                          #107 Development Planning            #108 Volunteer Management to
                                                                                                Roundtable                           Maximize Your Workforce
                                                                                                                                     (Combined with Walk Track)
3:45 PM - 5:00 PM     LEADERSHIP TRACK                                                          #104C Organizational Assessment Update
                                                                                                PrEsiDEnts’ rounDtablE

3:45 PM - 4:30 PM     CLINICAL TRACK                                                                                                                                       #210 Respiratory (B )
3:45 PM - 5:00 PM     CLINICAL TRACK                                                            #208 Assistive Technology (F - G)    #209 Children & Families (E - F)
3:45 PM - 5:00 PM     WALK TRACK                                                                #308 Volunteer Management to Maximize Your Workforce (Combined with Leadership Track)
6:30 PM - 7:15 PM     Exhibitor Reception - All Tracks
       7:15 PM        Walk Awards Dinner - All Tracks




                      ALL ATTENDEES                        LEADERSHIP TRACK                          CLINICAL TRACK                                WALK TO DEFEAT ALS™
 4
             The ALS Association 2009 ANNUAL CONFERENCE At-A-Glance
SATURDAY, JANUARY 24                  ACTIVITY                     SPEAKER              OPTION 1                                OPTION 2                            OPTION 3
7:00 AM - 8:30 AM     Continental Breakfast - All Tracks
8:30 AM - 10:00 AM    Research Update
8:30 AM - 10:00 AM    WALK TRACK                                              #309 Strangers to Sponsors: Secure Sponsorships and Underwriting
10:00 AM - 10:30 AM   Break - Posters & Exhibits
10:30 AM - 11:30 AM   LEADERSHIP TRACK & WALK TRACK                           #109 & #310 Let’s Connect: Harness the Power of You
10:30 AM - 12:30 PM   CLINICAL TRACK                                          #211 Research (A - B)                   #212 Research & Advocacy (A - B)   #213 End of Life: Planning and
                                                                                                                                                         Care (A - B)
11:30 AM - 12:30 PM   LEADERSHIP TRACK                                        #110 Plain Talk About The ALS           #111 Gift Planning: How to Start from Square One or Grow Your
                                                                              Association’s Research Program          Existing Gift Planning Program
                                                                              (Combined with Clinical & Walk)
11:30 AM - 12:30 PM   WALK TRACK                                              #311 Plain Talk About The ALS Association’s Research Program (Combined with Leadership & Clinical)
12:30 PM - 1:30 PM    Combined Luncheon - All Tracks
1:30 PM - 3:30 PM     CLINICAL TRACK                                          #214 Federal Benefits for Veterans      #215 Clinic Services (A)           #213 End of Life: Planning and
                                                                              with ALS and their Families                                                Care (C - E)
1:30 PM - 2:30 PM     LEADERSHIP TRACK                                        #112 Practical Applications in Convio to Enhance Your Chapter’s ePhilanthropy Program
1:30 PM - 3:30 PM     LEADERSHIP TRACK                                        #113A Transactions to Connections: #114 Mock Multidisciplinary
                                                                              Master the Relationship Centered   Clinic (Combined with Clinical)
                                                                              Fundraising Essentials [PART 1]
1:30 PM - 3:30 PM     WALK TRACK                                              #312 Turning Walkers into Fundraisers
2:30 PM - 3:30 PM     LEADERSHIP TRACK                                        #115 Driving Traffic to Your Web Site
3:30 PM - 3:45 PM     Break
3:45 PM - 5:00 PM     CLINICAL TRACK                                          #212 Research & Advocacy (C - D)        #215 Clinic Services (B - C)       #216 Spirituality
3:45 PM - 5:00 PM     LEADERSHIP TRACK                                        #113B Transactions to Connections: #116 Making It Into the News:           #117 DonorPro: Update and
                                                                              Master the Relationship Centered   How to Capture Media Attention          Dialogue
                                                                              Fundraising Essentials [PART 2]
3:45 PM - 5:00 PM     WALK TRACK                                              #313 Easy Money: Exciting New Revenue Stream
6:30 PM - 10:00 PM    Annual Conference Awards Banquet




                      ALL ATTENDEES                        LEADERSHIP TRACK         CLINICAL TRACK                                  WALK TO DEFEAT ALS™
                                                 Leadership Track               -   THURSDAY, JANUARY 22                                                          5
7:30 AM - 8:30 AM                  Continental Breakfast - All Tracks
8:30 AM - 9:30 AM            #101A Executive Director Program Welcome
ExEcutivE DirEctor Program          The day-long program features training and sharing of successful strategies for chapters. Agenda includes presentations and
                                    group discussion.
9:30 AM - 12:00 PM           #101B Lessons I’ve Learned
ExEcutivE DirEctor Program          Executive Directors share best practices, hard-learned lessons and strategies to overcome challenges for chapter
                                    management. Topic to be addressed is Coaching, Managing & Evaluating Staff
10:30 AM - 11:00 AM              Break - Posters & Exhibits
12:00 PM - 1:15 PM               Combined Luncheon - All Tracks
1:30 PM - 3:30 PM          #101C It’s a Corporate World
ExEcutivE DirEctor Program       Interested in discovering new ways to attract corporate dollars through Corporate Sponsorship and Corporate Walk Teams?
                                 Learn how to generate and manage corporate involvement as well as deciding the appropriate relationship of each corpora-
                                 tion within your Walk program. (Combined with Walk Track)
3:30 PM - 3:45 PM                Break
3:45 PM - 4:30 PM          #101D Role of the Executive Director in Guiding a Nonprofit Board with Carol Stone, Former President & CEO,
ExEcutivE DirEctor Program       Volunteer Center of Orange County and Jeff Wilcox, President & CEO, Executive Consulting For The Nonprofit Sector, Inc.
                                    The session examines how as an Executive Director you can partner with your board to transition into a group that focuses
                                    on governance and policy.
4:30 PM - 5:00 PM            #102   New Executive Director Orientation FYE 2009
                                                   Leadership Track                 -   FRIDAY, JANUARY 23
7:30 AM - 8:00 AM                   Continental Breakfast - All Tracks
8:15 AM - 9:30 AM                   CONFERENCE KICK-OFF & WELCOME
                                    Welcome by Allen L. Finkelstein, Chair, National Board of Trustees, The ALS Association
                                    Keynote Speaker: Dan Migala, Publisher, The Migala Report, Author, “Dugout Wisdom”
                                    “Hall of Fame Lessons in Hope” Turn to page 21 for full speaker bio
9:30 AM - 10:00 AM                  Break - Posters & Exhibits
10:00 AM - 10:30 AM #103            Leading the Successful Nonprofit
                                    Leadership Featured Speaker: Jeff Wilcox, President & CEO, Executive Consulting For The Nonprofit Sector, Inc.

                                    What is the secret to “leading” a successful nonprofit organization today? No matter what position an individual has in support-
                                    ing a mission statement, there are several principles about leading others that can be drawn from the best practices of the most
                                    successful nonprofits. Every person has a leadership responsibility to the mission statement of the organization. This keynote
                                    address will help you to think about yours! Get ready for a journey ... and be open to the possibilities of where it can take you
                                    and your organization. (Combined with Walk Track)
6                                               Leadership Track               -   FRIDAY, JANUARY 23
10:45 AM - 12:00 PM #104A Financial Responsibilities of a Nonprofit Board
PrEsiDEnts’ rounDtablE    Chapter Board responsibilities are to ensure the organization works to fulfill its’ purpose, meet its’ obligations and complies
                          with laws. The board provides the necessary oversight of service, administrative and financial processes. This session ex-
                          amines the critical policies and internal controls that need to be in place for good governance.
                          (PRESENTATION WILL BE PRECEDED BY CHAPTER TRUSTEE ELECTION)
10:45 AM - 12:00 PM #105  Five Virtues of Marketing with Dan Migala, Publisher, “The Migala Report” and Author, “Dugout Wisdom”
                                 Learn five universal tools to apply to any sized marketing initiative through this high-energy and educational presentation
                                 that features case studies from the world of sports and entertainment marketing.
12:00 PM - 1:30 PM             Combined Luncheon - All Tracks
                               Featured Guest Speaker: Janet Ginn, CEO and President, Heifer Foundation
                               “Become a Beacon of Change” Turn to page 21 for full speaker bio
1:30 PM - 3:30 PM        #104B Succession Planning: Creating a Continuity of Leadership
PrEsiDEnts’ rounDtablE           with Jeff Wilcox, President & CEO Executive Consulting For The Nonprofit Sector, Inc.
                                 What will happen if there is a sudden change in leadership in your organization? Is there a pathway for future leaders to
                                 stay and grow with your organization? This session will examine how to create a continuity of leadership by examining the
                                 Board’s critical role in securing your chapter’s future. Specific tools will be provided to help participants prepare for the
                                 inevitable occurrence of a leadership transition.
1:30 PM - 3:30 PM        #106    Mining Your Database to Increase Corporate Support
                                 There are goldmines of income opportunities within your existing constituents. Join us as we discuss methods for unearth-
                                 ing corporate supporters, board members, and event committee members within your current database.
                                 (Combined with Walk Track)
3:30 PM - 3:45 PM              Break
3:45 PM - 5:00 PM        #104C Organizational Assessment Update
PrEsiDEnts’ rounDtablE           Next steps in the Organizational Assessment Initiative including charges to the taskforces, timeline and discussion.
3:45 PM - 5:00 PM        #107    Development Planning Roundtable with Juan Ros, Vice President for Philanthropy, The ALS Association
                                 Development planning includes looking beyond events to other revenue sources such as direct mail, major gifts, and gift
                                 planning. Using a Roundtable format, share experiences and ask questions to learn best practices for building and sustain-
                                 ing a robust Development program. Come prepared with questions and case studies to discuss with your peers.
3:45 PM - 5:00 PM        #108    Volunteer Management to Maximize Your Workforce
                                 Improve Walk fundraising by empowering your volunteers. Learn how to manage delicate volunteer relationships to
                                 maximize results. (Combined with Walk Track)
6:30 PM - 7:15 PM                Exhibitor Reception - All Tracks
      7:15 PM                    Walk Awards Dinner - All Tracks
                                 Join us for the 3rd Annual Walk to Defeat ALS™ Awards Dinner as we celebrate the success of the Walk program and
                                 recognize chapter achievements across the country.
                                         Leadership Track               -   SATURDAY, JANUARY 24                                                      7
7:00 AM - 8:30 AM           Continental Breakfast - All Tracks
8:30 AM - 10:00 AM          Research Update
10:00 AM - 10:30 AM         Break - Posters & Exhibits
10:30 AM - 11:30 AM #109    Let’s Connect: Harness the Power of You
                            with Marshall Howard, Marshall Howard & Associates

                            Turn your meetings, calls and emails into triumphs through the power of a genuine connection. Marshall reveals his favorite
                            ways to connect with others in a one-on-one setting: on the phone, at lunch, or over a cup of coffee. He’ll show you how to
                            deepen that connection and build trust with someone who is important to your mission. (Combined with Walk Track)
11:30 AM - 12:30 PM #110    Plain Talk About The ALS Association’s Research Program with Lucie Bruijn, PhD, Senior Vice President of
                            Research and Development, The ALS Association

                            Dr. Bruijn, Science Director and Vice President for The ALS Association will discuss the critical importance of research and
                            provide an overview The Association’s commitment to leaving no stone unturned in the quest to find a cure for ALS.
                            (Combined with Clinical Track & Walk Track)
11:30 AM - 12:30 PM #111    Gift Planning: How to Start from Square One or Grow Your Existing Gift Planning Program with
                            Janet Ginn, President & CEO, Heifer Foundation

                            We will discuss and present the action steps you need to take - whether you want to lay the foundation and launch a new Gift
                            Planning program or strengthen and grow the success of your existing program. Topics will include: “Stewardship Strate-
                            gies”, “Setting Short and Long Term Objectives”, and “Implementing a basic Communications/Marketing Plan”.
12:30 PM - 1:30 PM          Combined Luncheon - All Tracks
1:30 PM - 2:30 PM    #112   Practical Applications in Convio to Enhance Your Chapter’s ePhilanthropy Program
                            with Donna Wilkins, President, Charity Dynamics

                            Learn how your chapter can make the strongest use of the current online applications to share information, coordinate
                            events, and raise money for your chapter. This session will give you an overview of tools available in Convio, feature high-
                            lights, and examples of how chapters are getting results with these applications. This session will provide valuable informa-
                            tion and ideas for chapter leaders who are new to Convio and those who have been using Convio products for several years.
1:30 PM - 3:30 PM    #113A Transactions to Connections: Master the Relationship Centered Fundraising Essentials [PART 1]
                            with Marshall Howard, Marshall Howard & Associates

                            Find freedom from the endless cycle of transactional fundraising. Discover how to easily move into the less stressful and
                            more productive world of Relationship Centered development. This fun, interactive learning event focuses on the “Power of
                            You” and building your own “Relationship Centered Fundraising Plan.”
 8                                       Leadership Track                -   SATURDAY, JANUARY 24
1:30 PM - 3:30 PM    #114   Mock Multidisciplinary Clinic with Vermont ALS Certified Center Multidisciplinary Team - University of Vermont
                            College of Medicine, Burlington, VT. Rup Tandan, M.D., Director.

                            Never been to an ALS clinic, but curious about what goes on and how it operates? This is your chance to find out! The
                            mock clinic will provide attendees with a realistic “visit” to an ALS clinic, including assessment, treatment, and patient
                            interaction with the multidisiciplinary team. (Combined with Clinical Track)
2:30 PM - 3:30 PM    #115   Driving Traffic to Your Website with Markus Beeby, Interactive Consultant, Convio, Inc.
                            Understanding website traffic is critical to your online success. Learn how to effectively drive traffic to your website from
                            the three major sources: search engines, referring links and direct URL input.
3:30 PM - 3:45 PM          Break
3:45 PM - 5:00 PM    #113B Transactions to Connections: Master the Relationship Centered Fundraising Essentials [PART 2]
                            See description on previous page.
3:45 PM - 5:00 PM    #116   Making It Into the News: How to Capture Media Attention
                            Learn from reporters, chapter communications experts and national communications staff about effective strategies and tech-
                            niques in building awareness with the media
3:45 PM - 5:00 PM    #117   DonorPro Update and Dialogue with Mark Thomas, Vice President, Professional Services, TowerCare Technologies
                            This session is designed for chapters using DonorPro. We will review the software’s functionality including data sync, new
                            report functions and upgrades.
6:30 PM - 10:00 PM          Annual Conference Awards Banquet
                                               cLinicaL Track            -   THURSDAY, JANUARY 22                                                             9
                                            ALL CLINICAL TRACK ATTENDEES
7:30 AM - 8:30 AM        Continental Breakfast - All Tracks
10:30 AM - 11:00 AM      Break - Posters & Exhibits
12:00 PM - 1:15 PM       Combined Luncheon - All Tracks
5:30 PM - 7:00 PM        Patient Services Reception
                         Free Evening
                                             #201 Basics - 8:30am - 2:45pm
8:30 AM - 10:00 AM #201A The Nuts and Bolts of ALS with Theresa Imperato, R.N. & Mark A. Ross, M.D.

                          An ALS primer, this session will provide foundational information which will prepare the attendee who is new to ALS
                          to better absorb later sessions. The definition of ALS and the relationship of ALS to other motor neuron diseases will be
                          discussed. To be reviewed: the epidemiology and various clinical presentations of ALS; the diagnostic process; pathogenetic
                          mechanisms of ALS; and patients’ symptoms and approaches to symptom management.
10:00 AM - 10:30 AM #201B Respiratory Care for People with ALS: Where Are We Now and Where Do We Need to Go? with Noah
                          Lechtzin, M.D., MHS

                               This session will provide a description of how ALS affects the respiratory system, discuss common respiratory symptoms
                               and physical exam findings used to evaluate respiratory function and address the rationale and benefits of various treatments.
11:00 AM - 12:00 PM #201C Intro to Everything: Assistive Technology, Speech/Language, Nutrition & Support Groups

                            A fast paced session, “Introduction to Everything” is designed to overview what servcies are provided by which professional
                            within the multidisciplinary team and chapter setting. It will provide those who are new to ALS with foundational informa-
                            tion on which to build throughout the conference.
1:30 PM - 2:15 PM     #201D What is This Thing Called Grief? with Fredda Wasserman, MA, MPH, LMFT, CT
                               Grief is a natural part of an ALS diagnosis, yet patients, caregivers and even health professionals are not always well pre-
                               pared for the impact, intensity, and duration of grief. In this workshop, the cognitive, emotional, and spiritual aspects of
                               grief will be examined. Lecture, discussion and experiential components are included.
2:15 PM - 2:45 PM     #201E Basics Panel Discussion
                                            #202 nUTriTiOn - 8:30am - 12:00pm
8:30 AM - 9:30 AM     #202A Practical Ways to Support the Nutrition Status of an ALS Patient From Diagnosis to End of Life
                               with Susan Whitacre, RD, LD

                               Many factors that can contribute to an ALS patient’s decline in nutrition status. This presentation will address some of these
                               factors and how the entire multidisciplinary team is important in helping to maintain a patient’s status. This presentation will
                               help the attendee to be better prepared to address patients’ questions and concerns about nutrition.
 10                                            cLinicaL Track             -   THURSDAY, JANUARY 22
9:30 AM - 10:00 AM    #202B Surgical Procedures in ALS: From Feeding Tubes to Breathing Tubes with Raymond Onders, M.D.
                          This session will demonstrate what surgical procedures associated with ALS (including gastrostomies, percutaneous cath-
                          eters, tracheostomy and others) entail through videos and demonstrations. This session is designed to equip Patient Services
                          staff to more thoroughly answer questions and make appropriate referrals in the course of working with patients and fami-
                          lies.
10:00 AM - 10:30 AM #202C Sealing the Deal: Encouraging Tube Feeding in Patients with ALS with Lorraine Danowski, MSRD &
                          Theresa Imperato, R.N.

                                This presentation is designed to prepare members of the multidisciplinary ALS team to talk with patients and families about
                                enteral feeding tubes. A discussion of tube placement, insertion, potential negative aspects and when is the optimal time for
                                placement will be included.
11:00 AM - 12:00 PM #202D Nutrition Assessment and Recommendations by Registered Dietitians to Patients with ALS:
                          A Survey of Current Nutrition Practice in the United States with Karen Martin, MA, RD, LD &
                          Linda White, RD, CDE

                                This session will review the findings of a web-based survey of registered dietitians which was conducted to determine
                                knowledge, practice patterns and recommendations among dietitians working with the ALS population in the United States.
                                              #203 cOGniTiOn - 8:30am - 10:30am
8:30 AM - 9:00 AM     #203A Utility of a Brief Screening Protocol to Identify Cognitive and Behavioral Abnormalities in ALS
                            Patients with Fizaa Ahmed, BS & Jennifer M. Murphy, Ph.D.
                                28-48% of ALS patients possess a spectrum of frontotemporal deficits on neuropsychological measures. In recent research, a
                                brief screening battery was compared with a thorough neuropsychological evaluation to determine whether a few measures can
                                be a valid instrument in identifying ALS patients with cognitive and behavioral changes. This session will overview the results.
9:00 AM - 9:45 AM     #203B Managing Difficult Behaviors in ALS Patients with Frontal Temporal Cognitive Impairment
                                with Beth Rush, Ph.D., ABPP/CN

                            This presentation will review information about the prevalence of frontal temporal cognitive impairment (FTCI) in ALS.
                            Specific behavioral techniques will be applied to clinical examples and resources for caregivers and members of the clinical
                            management team will be reviewed.
9:45 AM - 10:30 AM    #203C Clinical Management of Cognitive and Behavioral Change with Allyson Brothers, MA &
                            Claire Flaherty-Craig, Ph.D.

                                This presentation will describe cognitive-behavioral changes associated with ALS and discuss the approach to such changes
                                by various members of the multidisciplinary team. Implications of cognitive-behavioral change for overall patient manage-
                                ment will be addressed and a framework provided for the development of research-based interventions.
                                             cLinicaL Track            -   THURSDAY, JANUARY 22                                                       11
                                    #204 speech/LanGUaGe - 11:00am - 2:45pm
11:00 AM - 12:00 PM #204A ALS: Exploring Traditional Speech Language Therapy and Augmentative and Alternative
                          Communication Assessment and Intervention Needs with Mary Jean J. Dyczko, MA, CCC/SLP, ATP
                             This session will introduce participants to the nature and progression of speech, language and communication deteriora-
                             tion in ALS. Traditional and specialized speech assessment, intervention and intervention strategies will be discussed and
                             contrasted. Current and new emerging augmentative and alternative communication (AAC) technologies will be discussed.
                             Fluctuating access issues and identification of funding sources will also be reviewed.
1:30 PM - 2:45 PM    #204B Dysphagia, Life Decisions and the ALS Patient: The SLP’s Role in Assessing, Predicting, Supporting, Educat-
                           ing, Counseling & Referring with Catherine M. Reynolds, MA, CCC-ACE-DLP/VAL
                              ALS patients often attend their first clinic visit with multiple questions, a desire to discuss their treatment options and
                             requesting a timeline for disease progression. Speech pathologists are often central in providing information. This presenta-
                             tion addresses the SLP’s obligation to know the literature, referral options, and his/her own comfort level with these discus-
                             sions.
                                               sessiOn #205 - 1:30pm - 2:45pm
1:30 PM - 2:45 PM    #205    Telemedicine and the Multidisciplinary Care Setting with April McVey, M.D.
                             This session will overview the use and clinical efficacy of telemedicine in a multidisciplinary ALS treatment setting.
                             Included will be discussion of treatment issues, as well as the benefits and challenges presented by telemedicine.
                                  #206 discipLine specific Break OUTs - 2:55pm - 5:00pm
2:55 PM - 5:00 PM    #206     Assistive Technology          Social Work         Physical/Occupational Therapy                  Clinic Nursing
                                    Nutrition               Ventilation           Patient Services Directors                  Speech/Language

                                               cLinicaL Track              -   FRIDAY, JANUARY 23
                                                aLL cLinicaL Track aTTendees
7:30 AM - 8:00 AM            Continental Breakfast - All Tracks
8:15 AM - 9:30 AM            CONFERENCE KICK-OFF & WELCOME
                             Welcome by Allen L. Finkelstein, Chair, National Board of Trustees, The ALS Association
                             Keynote Speaker: Dan Migala, Publisher, The Migala Report, Author, “Dugout Wisdom”
                             “Hall of Fame Lessons in Hope” Turn to page 21 for full speaker bio
9:30 AM - 10:00 AM           Break - Posters & Exhibits
12:00 PM - 1:30 PM           Combined Luncheon - All Tracks
                             Featured Guest Speaker: Janet Ginn, CEO and President, Heifer Foundation
                             “Become a Beacon of Change” Turn to page 21 for full speaker bio
 12                                              cLinicaL Track             -   FRIDAY, JANUARY 23
3:30 PM - 3:45 PM               Break
6:30 PM - 7:15 PM               Exhibitor Reception - All Tracks
      7:15 PM                   Walk Awards Dinner - All Tracks
                                Join us for the 3rd Annual Walk to Defeat ALS™ Awards Dinner as we celebrate the success of the Walk program and
                                recognize chapter achievements across the country.
                                     #207 creaTiVe sUppOrTs - 10:00am - 2:30pm
10:00 AM - 10:30 AM #207A Design Competition as an Impetus to Developing Innovative Technologies for Improving Quality of
                          Life with ALS with Jim McEwen, Ph.D., Peng
                          The ALS Society of British Columbia, Canada, offered a prize to engineering students in the fields of biomedical, electri-
                          cal, computer and mechanical engineering. The objective: to encourage the design of innovative technologies that would
                          improve the quality of life of ALS patients. An overview of the competition and the innovative designs that resulted will be
                          provided.
10:30 AM - 11:00 AM #207B The Use of Webinars for Educating Persons Living with ALS with Susan L. Whitney, Ph.D., PT, NCS, FAPTA

                          This presentation will review the development of a Webinar program which provides healthcare information to PALS, fami-
                          lies and interested others. Practical information about the program’s development and a discussion about the benefits and
                          drawbacks of using Webinars as a means of outreach will be included.
11:00 AM - 12:00 PM #207C Care Connection with Sue Humphries, MSW, LMSW, Sharon Matland, R.N., MBA, Vice President of Patient Services,
                          The ALS Association

                             The ALS Association’s Care Connection establishes formalized volunteer care networks for the families of ALS patients.
                             The goals of a Care Connection are to increase caregiver well-being and reduce caregiver burden. This session will
                             overview the program and discuss the pilot of the first Care Connection during 2007-2008.
1:30 PM - 2:30 PM      #207D Negotiating the Maze of Medicare Billing with Nancy L. Freeman, RHIA, MBA, MHA, Director, Health and
                             Education Consulting Practice, Huron Consulting Group

                                A no nonsense session about the ins and outs of billing patient care to Medicare: from clinic models to billing types; coding
                                systems to what is a billable service. This session will provide essential information to Patient Services staff involved in as-
                                sisting patients and families to access and fund services.
                                 #208 assisTiVe TechnOLOGY - 10:00am -5:00pm
10:00 AM - 11:00 AM #208A Managing an Assistive Technology Loan Program with Alisa Brownlee, ATP; Lisa Bruening, MS, CCC-SLP;
                                Joy Meachum, ATS & Antoinette Verdone, MSBME, ATP

                                Loan programs offer PALS an important opportunity to try assistive technologies before making purchases. More impor-
                                tantly, for those without adequate resources, loan programs may provide the only access to communication technology, elec-
                                tronic aides to daily living, and small assistive devices. An assistive technology loan program can be challenging to maintain
                                and administrate. This session will address the major issues and challenges.
                                                   cLinicaL Track           -   FRIDAY, JANUARY 23                                                     13
11:00 AM - 12:00 PM #208B Free and Low Cost Assistive Technologies for People with ALS with Joy Meachum, ATS

                             This session will focus on devices available for no or low-cost, including computer access, speech generation,
                             telecommunications and aids to daily living.
1:30 PM - 2:30 PM      #208C Durable Medical Equipment Loan Programs: How To’s and Lessons Learned with Antoinette Verdone,
                             MSBME, ATP

                             This presentation will discuss the management of durable medical equipment (DME) loan programs. A highly interactive
                             session, attendees will have the opportunity to learn from each other, brainstorm and compare notes. The physical and elec-
                             tronic handling of an equipment inventory will be discussed.
2:30 PM - 3:30 PM      #208D Power Mobility for People with ALS: From Nuts and Bolts to Advocacy with Ann Eubank, ATP, ORT/L
                             Due to the rapid progression of ALS, it is important to consider power mobility early in the disease progression. Using evi-
                             dence-based practices, this session will describe and illustrate power seat functions and the medical, postural and functional
                             justifications for each. Additionally, aspects of the current service delivery model, including funding, will be addressed.
3:45 PM - 4:45 PM      #208F Communicating with Eyes and Thoughts: Eye Gaze Systems and Brain Wave Devices with Theresa
                             Vaughan, Debra Zeitlin, MA, CCC, ATP, and Alisa Brownlee, ATP

                                Finding communication systems for those who have been diagnosed with locked-in syndrome (LIS), advanced progressive
                                neuromuscular diseases, or who are non-verbal due to living on a ventilator is often difficult. Options are often limited to
                                high-tech devices like eye-gaze systems or brain-computer interface (BCI) devices. This session will review these technolo-
                                gies and their applications for ALS patients
4:45 PM - 5:00 PM   #208G Assistive Technology Panel Discussion
                                     #209 chiLdren & famiLies - 10:00am - 5:00pm
10:00 AM - 11:00 AM #209A Come Play with Me: Approaches for Therapeutic Work with Children of ALS Patients with Beth
                                Barrett, MSW, CT

                          How do you talk with children about their loved one’s diagnosis of ALS? This presentation, which will pair lecture and expe-
                          riential learning, will provide talking and play resources for use with children of varying ages and developmental stages.
11:00 AM - 12:00 PM #209B ALS411 - The “All For Kids” Resource and Support Program with Bobbi Greenberg, BAA, CAE &
                          Jane McCarthy, MSc, MPH

                                ALS411, an “all for kids” program, is an outreach resource designed for children and teens who have been impacted ALS.
                                The program contains printed materials and two interactive web sites: one for children and one for teens/young adults. This
                                presentation will review the needs assessment, program development and promotion, and impact evaluation phases of the
                                project. Insight from youths who were interviewed about their experiences will be highlighted.
 14                                              cLinicaL Track              -   FRIDAY, JANUARY 23
1:30 PM - 2:30 PM     #209C From “Huh?” to “Duh!” - Clearly Communicating Information to Families with Julie A. McDougal, RRT,
                               MAE

                            As healthcare professionals and educators, we have a duty to clearly communicate with culturally diverse patients and fami-
                            lies. Unfortunately communication errors result in not only miscommunication, but also the improper use of medications
                            and therapies. During this presentation, participants will be provided with practical strategies to ensure that communication
                            effectively conveys healthcare information.
2:30 PM - 3:30 PM     #209D Meeting the ALS Caregivers’ Needs: An Evidence-Based Approach with Helen Elizabeth Stephens, MA &
                            Susan Walsh, R.N., ACNS-BC
                            Optimizing supports for caregivers is a critical adjunctive component in the care of patients with ALS. This session will
                            report on evidence-based approaches to supporting the ALS caregiver. A caregiver assessment tool and a pilot program to
                            develop caregiver problem-solving skills, will be presented.
3:45 PM - 4:30 PM     #209E Building Community: Caregiver Support Meetings with Shirley Eisenberg, MSSA, LISW-S
                               This session will discuss how to develop and facilitate a caregiver support group. Lecture, discussion and an experiential
                               component will provide attendees with practical tools to make support groups more effective and beneficial to caregivers.
4:30 PM - 5:00 PM     #209F Children & Family Panel Discussion
                                            #210 respiraTOrY - 2:30pm - 4:30pm
2:30 PM - 3:30 PM     #210A Introduction to “Sip n’ Puff,” a Creative Approach to Non-Invasive Ventilation with Cyndy Miller, RRT
                            “Sip n’ Puff” is a non-invasive ventilation option for patients with returning respiratory acidosis in spite of using BiPAP.
                            This presentation will review “Sip n’ Puff” technology, its uses and benefits.
3:45 PM - 4:30 PM     #210B Results of Diaphragm Pacing System in ALS with Raymond Onders, M.D.
                               Respiratory failure is a major cause of mortality in ALS patients. Diaphragm pacing stimulation (DPS) is being utilized
                               worldwide to provide natural diaphragm ventilation. Presently in the United States, DPS has been utilized in two prospec-
                               tive trials. This session will highlight the possible future role of DPS in the respiratory management of patients with ALS.
                                               cLinicaL Track            -   SATURDAY, JANUARY 24

                                                  aLL cLinicaL Track aTTendees
7:00 AM - 8:30 AM              Continental Breakfast - All Tracks
8:30 AM - 10:00 AM             Research Update
10:00 AM - 10:30 AM            Break - Posters & Exhibits
12:30 PM - 1:30 PM             Combined Luncheon - All Tracks
3:30 PM - 3:45 PM              Break
6:30 PM - 10:00 PM             Annual Conference Awards Banquet
                                                CliniCal TraCk             -   SATURDAY, JANUARY 24                                                          15
                                        #211 rESEarCH - 10:30am - 12:30pm
10:30 AM - 11:30 AM #211A The ALS Nutrition/NIPPV Study with Edward Kasarskis, M.D., Ph.D.
                          In a multi-center pilot study, ALS patients with FVC> 50% of predicted were entered into a nutrition research arm or a
                          NIPPV research arm and studied at baseline, 16, 32, and 48 weeks. This presentation will discuss the overall organization of
                          the study, early results, and practical applications of the work.
11:30 AM - 12:30 PM #211B Quality of Life Assessment: Methods and Application with Helen Elizabeth Stephens, MA & Susan Walsh, R.N., ACNS-BC
                                The ALS-Specific Quality of Life instrument (ALSSQOL) is a clinical and research tool that assesses QOL. This instrument
                                has been the basis for 3 important studies which will be presented: 1) A national study of QOL in individuals with ALS to
                                determine whether differences exist between those who attend multidisciplinary clinics and those who do not; 2) The devel-
                                opment and validation of a shortened version, the ALSSQOL-R; and 3) The use of the ALSSQOL as a standard of care for
                                assessing patient QOL and its practical application by a multidisciplinary ALS Clinic team.
                                  #212 rESEarCH & aDVOCaCY - 10:30am - 5:00pm
10:30 AM - 11:30 AM #212A Improving Patient Services Through Advocacy with Steve Gibson, Vice President, Government Relations and
                                Public Affairs, The ALS Association & Patrick Wildman Director, Communications and Public Policy, The ALS Association
                          Join your colleagues for an informative and collaborative discussion on how patient services and clinical staff can partner
                          with The Association’s Advocacy Department to help ensure that federal agencies respond to the needs of people with ALS.
                          Discussion will examine issues related to the Centers for Medicare and Medicaid Services and the Veterans Administration,
                          including how you can use advocacy to improve patient services, promote ALS public policies, and assist people with ALS
                          to navigate federal programs.
11:30 AM - 12:30 PM #212B Plain Talk About The ALS Association’s Research Program with Lucie Bruijn, Ph.D., Senior Vice President of
                          Research and Development, The ALS Association
                             Dr. Bruijn will discuss the critical importance of research and overview The Association’s commitment to leaving no stone
                             unturned in the quest to find a cure for ALS. (Combined with Leadership & Walk Tracks)
3:45 PM - 4:30 PM      #212C Genetics of Sporadic and Familial ALS Genetic Counseling in an ALS Setting with Sandra Donkervoort,
                             MS & Nailah Siddique, R.N., MSN
                                Genetic counseling is the process by which patients and their families are educated and provided with an assessment of
                                heritable risk factors. Appropriate genetic counseling prior to genetic testing is essential to ensure patients’ understanding of
                                the implications of both positive and negative test results. In this session, issues in ALS genetics, including the latest genetic
                                advances, will be reviewed. Case studies will be used to demonstrate genetic counseling techniques and approaches.
4:30 PM - 5:00 PM      #212D Difficulties Encountered with Enlisting FALS Patients and Family Members’ Participation in
                             Research Studies with Cathy Frye, BSN, CRNAC
                                FALS patients are often reluctant to participate in research studies. This presentation will review information about their
                                documented reluctance, including what family members self-report about motivation. Methods to encourage research par-
                                ticipation will be discussed.
16                                            cLinicaL Track             -   SATURDAY, JANUARY 24
                               #213 end Of Life: pLanninG & care - 10:30am - 3:30pm
10:30 AM - 11:30 AM #213A Facilitating Advance Planning, and Support Throughout Disease Progression with Gary Buckholz, M.D.
                              & Jeff Stoneberg, DO

                              When patients are first diagnosed with ALS, they typically leave the doctor’s office in shock and with many unanswered
                              questions. Many of those unasked questions can be anticipated, as can the myriad additional questions that will surface
                              throughout the course of the disease. This presentation will highlight the importance of advance communication planning so
                              that health care providers, patients and caregivers can partner to establish goals of care consistent with the patient’s treatment
                              preferences.
11:30 AM - 12:30 PM #213B A Specialized Hospice Program’s Interdisciplinary Approach to the ALS Patient in End of Life Care
                          with Pam Barrett, LMSW; Riza Carter, R.N.; Jan Jester, R.N. & Susan Whitacre, RD, LD

                          This presentation will explore strategies for the successful development of an interdisciplinary hospice ALS program.
                          Patient care needs, family needs, equipment needs and issues specific to the end of life will be discussed.
1:30 PM - 2:00 PM   #213C Helping Hospices Understand Treatment Issues for ALS Patients with Theresa Imperato, R.N. & Debbie
                          Schlossberg, MSW, LSW

                          This session will overview treatment issues specific to ALS patients at the end of life. Designed to prepare Patient Services
                          staff to educate hospices about critical challenges in the provision of care to ALS patients, this session will provide practical
                          and understandable information.
2:00 PM - 3:00 PM   #213D Communicating With the Non-Verbal Patient in Palliative or Hospice Care with Alisa Brownlee, ATP &
                          Lisa Bruening, MS, CCC-SLP

                              Of critical importance at the end of life is the opportunity for the patient to convey fears and concerns about the dying pro-
                              cess. For patients with speech impairments, these conversations are often less than optimal because of the time required to
                              use adaptive communication. This session will examine strategies to enhance communication about end of life when work-
                              ing with a patient who presents with communication impairments.
3:00 PM - 3:30 PM   #213E End of Life Panel Discussion
                                            sessiOn #214 - 1:30pm - 3:30pm
1:30 PM - 3:30 PM   #214 Federal Benefits for Veterans with ALS and Their Families with Bo Rollins, Field Director, Paralyzed Veterans
                              of America

                              This presentation will provide detailed information about the benefits and healthcare options available to veterans with ALS,
                              as well as for their families and/or survivors. Highlighted topics will include disability compensation, respite care, durable
                              medical equipment, memorial arrangements, transportation and equipment, educational assistance and appeals. The
                              presenter will be available throughout the conference to address issues on an individual basis.
                                             cLinicaL Track            -   SATURDAY, JANUARY 24                                                       17
                                      #215 cLinic serVices - 1:30pm - 5:00pm
1:30 PM - 3:30 PM   #215A Mock Multidisciplinary Clinic with the Vermont ALS Certified Center Multidisciplinary Team - University of Vermont
                             College of Medicine, Burlington, VT. Rup Tandan, M.D., Director.

                          Never been to an ALS clinic, but curious about what goes on and how it operates? This is your chance to find out! The
                          mock clinic will provide attendees with a realistic “visit” to an ALS clinic, including assessment, treatment, and patient in-
                          teraction with the multidisiciplinary team. (Combined with Leadership Track)
3:45 PM - 4:30 PM   #215B Physical Activity and Exercise with ALS with Leslie McLachlan, PT, MSPT, ATP
                          This presentation will identify the benefits and risks of engaging in a regular physical exercise program after a diagnosis of
                          ALS. A review of the current research in this area will be provided and recommended protocols for beginning or continuing
                          regular physical activity will be summarized.
4:30 PM - 5:00 PM   #215C Common “Scents” for ALS Patients and Others with Janet Goodard, R.N., BSN, CCAP
                             This session will overview the use of complementary therapies within the multidisciplinary clinic to combat stress, sleep and
                             pain issues. Included will be discussion about how these therapies can be integrated with traditional care, as well as some
                             practice tips.
                                              #216 spiriTUaLiTY - 3:45pm - 5:00pm
3:45 PM - 5:00 PM   #216     Spirituality Issues and ALS: A Clinic, Chapter and Community Partnership with Kevin Ferris, MSW,
                             LCSW; Ghazala Hayat, M.D. & Mary Riggs, MS, CRC, LPC

                             ALS by its very nature implies spiritual crisis. It triggers similar emotions and draws out life wrenching questions in each
                             of us. We, as healthcare professionals, must help patients and families address grief and loss issues throughout the disease’s
                             progression, in order to help them truly maximize the quality of their lives. The practice parameter for ALS care tells us why
                             we must help. This session will show us how.
 18                              WaLk      TO   defeaT aLs™ Track                   -   TUESDAY, JANUARY 20
12:00 PM - 1:00 PM         Walk Networking Lunch
1:00 PM - 5:00 PM    #301A Walk 101 - Part 1
                            It’s back to basics with this day and a half training on the Walk Program’s core standards and components. This training is
                            respectfully required for all new Walk staff and recommended for those with desire to enhance their program knowledge and
                            understanding.

                              WaLk      TO    defeaT aLs™ Track                 -    WEDNESDAY, JANUARY 21
7:30 AM - 8:30 AM          Continental Breakfast
8:30 AM - 12:00 PM   #301B Walk 101 - Part 2
                            See description above.
12:00 PM - 1:00 PM         Walk Networking Lunch
1:00 PM - 5:00 PM    #302A Convio 101 - Part 1
                            Get an overview of the Convio software tool that enhances your online fundraising and awareness efforts. See how it is vital
                            for the Walk Program and integrates all your ePhilanthropy efforts; keeping best practices including secure information, per-
                            sonalized messaging and social networking in mind.
      7:00 PM               Dinner (Mock Team Captain Walk Kick-Off Luncheon)
                            Participate in a successful Walk Kick-Off Luncheon. Gain perspective and best practices during this mock event hosted by
                            your National Walk Staff.
                                WaLk     TO     defeaT aLs™ Track                -      THURSDAY, JANUARY 22
7:30 AM - 8:30 AM          Continental Breakfast
8:30 AM - 12:00 PM   #302B Convio 101 - Part 2
                            See description above.
12:00 PM - 1:15 PM          Combined Luncheon - All Tracks
1:30 PM - 3:30 PM    #303   It’s a Corporate World
                            Interested in discovering new ways to attract corporate dollars through Corporate Sponsorship and Corporate Walk Teams?
                            Learn how to generate and manage corporate involvement as well as deciding the appropriate relationship of each corpora-
                            tion within your Walk program. (Combined with Leadership Track)
3:30 PM - 3:45 PM           Break
3:45 PM - 5:00 PM    #304   Overcoming Obstacles to Drive Revenue within the Walk Program
                            Team up with your peers to learn effective techniques to overcome common issues that arise when running the Walk pro-
                            gram. Topics will be determined based upon Chapter input. Please bring your best practices, questions and concerns that
                            have impacted your Walk program.
                            Free Evening - All Attendees
                                       WaLk      TO   defeaT aLs™ Track                   -   FRIDAY, JANUARY 23                                            19
7:30 AM - 8:00 AM        Continental Breakfast - All Tracks
8:15 AM - 9:30 AM        CONFERENCE KICK-OFF & WELCOME
                         Welcome by Allen L. Finkelstein, Chair, National Board of Trustees, The ALS Association
                         Keynote Speaker: Dan Migala, Publisher, The Migala Report, Author, “Dugout Wisdom”
                         “Hall of Fame Lessons in Hope” Turn to page 21 for full speaker bio
9:30 AM - 10:00 AM       Break - Posters & Exhibits
10:00 AM - 10:30 AM #305 Leading the Successful Nonprofit
                               Leadership Keynote Speaker: Jeff Wilcox, President & CEO, Executive Consulting For The Nonprofit Sector, Inc.

                               What is the secret to “leading” a successful nonprofit organization today? No matter what position an individual has in support-
                               ing a mission statement, there are several principles about leading others that can be drawn from the best practices of the most
                               successful nonprofits. Every person has a leadership responsibility to the mission statement of the organization. This keynote ad-
                               dress will help you to think about yours! Get ready for a journey ... and be open to the possibilities of where it can take you and
                               your organization. (Combined with Leadership Track)
10:45 AM - 12:00 PM #306 Stop/Ask/Listen: Proven Techniques for Communicating and Selling the Walk Program
                         Learn how to effectively sell the value of participating in the Walk program to potential corporate teams and sponsors. As a
                         part of learning how to sell the Walk program, there will also be a focus on effectively selling the mission of the Association
                         to prospective participants.
12:00 PM - 1:30 PM       Combined Luncheon - All Tracks
                            Featured Guest Speaker: Janet Ginn, CEO and President, Heifer Foundation
                            “Become a Beacon of Change” Turn to page 21 for full speaker bio
1:30 PM - 3:30 PM      #307 Mining Your Database to Increase Corporate Support
                               There are goldmines of income opportunities within your existing constituents. Join us as we discuss methods for unearthing corpo-
                               rate supporters, board members, and event committee members within your current database. (Combined with Leadership Track)
3:30 PM - 3:45 PM           Break
3:45 PM - 5:00 PM      #308 Volunteer Management to Maximize Your Workforce
                               Improve Walk fundraising by empowering your volunteers. Learn how to manage delicate volunteer relationships to
                               maximize results. (Combined with Leadership Track)
6:30 PM - 7:15 PM              Exhibitor Reception - All Tracks
      7:15 PM                  Walk Awards Dinner - All Tracks
                               Join us for the 3rd Annual Walk to Defeat ALS™ Awards Dinner as we celebrate the success of the Walk program and
                               recognize chapter achievements across the country.
 20                                Walk      TO    DefeaT alS™ TraCk                 -   SATURDAY, JANUARY 24
7:00 AM - 8:30 AM           Continental Breakfast - All Tracks
8:30 AM - 10:00 AM          Research Update
8:30 AM - 10:00 AM     #309 Strangers to Sponsors: Secure Sponsorships and Underwriting with Marshall Howard, Marshall Howard & Associates
                              Tap into the most underutilized source of major funding today...corporate and personal sponsorships. Discover a three-step
                              Relationship Centered process to secure event and program underwriting from $5,000 - $50,000. Marshall has helped nonprof-
                              its raise over $60 million. He shatters the myths and reveals the secrets and how-to’s.
10:00 AM - 10:30 AM      Break - Posters & Exhibits
10:30 AM - 11:30 AM #310 Let’s Connect: Harness the Power of You with Marshall Howard, Marshall Howard & Associates
                         Turn your meetings, calls and emails into triumphs through the power of a genuine connection. Marshall reveals his favorite
                         ways to connect with others in a one-on-one setting: on the phone, at lunch, or over a cup of coffee. He’ll show you how to
                         deepen that connection and build trust with someone who is important to your mission. (Combined with Leadership Track)
11:30 AM - 12:30 PM #311 Plain Talk About The ALS Association’s Research Program with Lucie Bruijn, PhD, Senior Vice President of
                         Research and Development, The ALS Association

                              Dr. Bruijn, Science Director and Vice President for The ALS Association will discuss the critical importance of research and
                              provide an overview The Association’s commitment to leaving no stone unturned in the quest to find a cure for ALS.
                              (Combined with Leadership & Clinical Tracks)
12:30 PM - 1:30 PM          Combined Luncheon - All Tracks
1:30 PM - 3:30 PM      #312 Turning Walkers into Fundraisers
                              Discuss techniques to educate upon and motive fundraising efforts of all Walk participants. Learn how to increase the percent-
                              age of fundraisers attending your Walks at this important revenue-producing session.
3:30 PM - 3:45 PM           Break
3:45 PM - 5:00 PM      #313 Easy Money: Exciting New Revenue Stream
                              Join us for the unveiling of the National Pin-up Sales Program. This new program offers Chapters significant revenue
                              producing opportunities that requires minimal Chapter effort. Bring with you ideas of prospective national retail partners.
6:30 PM - 10:00 PM            Annual Conference Awards Banquet




                                            The ALS Association

                                                                                                   Walk Track Sponsor
                                                                                                                                             21

KEYNOTE SPEAKER:                 Dan                          As a sports marketing author, practitioner and educator, Dan Migala has served all

                                   Migala                     levels of the sports marketing community. Dan founded “The Migala Report”, a
                                                              sports marketing newsletter, to help educate sports marketing executives to help
                                                              professional and collegiate teams to grow their business. This Chicago-native also
                                        has served as a columnist for “Sports Business Journal” since 1999 and has authored three books on
                                        sports marketing.

                                        In his most recent book, “Dugout Wisdom: Life Lessons From Baseball”, Mr. Migala finds the heart in
                                        baseball, collecting and sharing words of wisdom from 55 greats of the game including the legend Lou
                                        Gehrig. This compilation of first person accounts of a moment in their lives when they doubted their
                                        dreams, overcame adversity or someone guided them with destiny altering advice. A sought-after speak-
                                        er, you can find him speaking at just about any sports league meeting or commenting on sports business
                                        topics for the New York Times, The Wall Street Journal, Chicago Tribune and other major news outlets.

                                      APPEARING  8:15 AM on Friday, January 23 (During the Conference Kick-off and Welcome)


FEATURED GUEST SPEAKER:                        Janet
As President and CEO of Heifer Foundation,
                                                 Ginn
Janet Ginn, leads this international philanthropic
foundation established to partner with people in the global movement to end hunger and poverty and care
for the earth. Heifer Foundation accomplishes this through developing, managing and investing endow-
ments to primarilary support the efforts of Heifer International, and educating the public on planned
charitable giving.

Mrs. Ginn is a Certified Fund Raising Executive (CFRE) and a graduate of Strategic Perspectives in Non-
profit Management at Harvard Business School. She conducts educational seminars worldwide for donors,
professional advisors and global partners on the various planned charitable giving instruments available
to individuals interested in providing for themselves, their loved ones AND a world in need. In her book,
“Circle of Giving: Donors’ Stories of Wisdom”, she shares her most memorable, personal experiences of
her work with donors.
                                      APPEARING 12:00 PM on Friday, January 23 (During the Combined Luncheon)
 22                      REGISTRATION INSTRUCTIONS: GENERAL INFORMATION
Registration                                                                      Confirmations
Admittance to conference sessions and functions requires conference               All registrations will be confirmed via email and only upon request.
registration and full payment prior to the opening session of the Annual
Conference. Conference badges must be worn to all sessions for admit-             Continuing Education Credit (Available to U.S. Citizens Only)
tance. If you are bringing a guest (spouse, friend, caregiver) to the “Guest”     The 2009 Clinical Conference Track is being submitted for approval to several
events (described below), include their fee (see page 23) in the total payment.   professional organizations. The ALS Association is pleased to apply for
                                                                                  continuing education credit for the following disciplines: registered dieticians,
Guests                                                                            nurses, occupational therapists, physical therapists, respiratory therapists,
Guest fee entitles the person to attend the following: The Exhibitor Recep-       social workers, speech and language pathologists.
tion, the Conference Kick-off event on Friday, the lunch with Guest Speak-
er Janet Ginn on Friday, the Walk Awards Dinner on Friday evening, the            In order to receive continuing education (CE) credit, you must be eligible in
Research Update on Saturday and the Annual Conference Awards Banquet              one of the above professional categories, and you must register and pay the
on Saturday evening.                                                              CE fee. Register for the CE credit on the Registration Form. There is a $25
                                                                                  per person processing charge for each individual requesting continuing
Online Conference Registration                                                    education credit.
Secure online registration is encouraged (see the box below). Attendance
for some sessions/workshops is limited, so we suggest you register online. In     Conference Hotel/Registration
order to maintain affordable attendance fees for as many people as possible,      The conference hotel is the Marriott Newport Beach Hotel, Newport Beach,
we must enforce deadlines, fee schedules and policies strictly. Please help       California. The special ALS Association group rate is $180.00 per night per
us by registering and booking your hotel room(s) in a timely fashion. Don’t       room (plus applicable taxes). Handicapped accessible rooms are available but
                                                                                  limited.

    Use Online Conference Registration                                            You will be pleased to know that ONLINE room reservations are now just
    You can register for the conference online anytime after November             a CLICK away! Go to www.alsa.org/community/conference and click the
    10, 2008. Visit www.alsa.org/community/conference and click the               Marriott Newport Beach Hotel link. You will be directed to the hotel’s home
    Annual Conference link. Enter the password ac09. Follow the                   page with The ALS Association’s group rate code already entered in the
    instructions to complete the Registration Form and pay with your              appropriate field. All you need to do is enter your arrival date to begin the
    credit card. Then click “submit.”                                             reservation process.

                                                                                  Make your reservations by phone using the toll-free direct hotel number
Cancellation/Substitution/Refund Policy                                           866-440-3375 or the toll-free reservation line 800-228-9290. Tell the
Refund of registration fees minus a cancellation fee of $35 will be made only     reservations clerk you are with The ALS Association Conference. Reserva-
upon written request to The ALS Association’s National Office. Fax the            tions must be made by December 19, 2008 to assure availability at this special
written cancellation to Melissa Gonzalez at 818-880-9057 or mail to The ALS       $180 nightly rate for the nights of January 22-24, 2009.
Association, attention: Melissa Gonzalez, 27001 Agoura Road, Suite 250,
Calabasas Hills, CA 91301. This request must be received in the National          Remember that individual attendees (not The Association’s National Office)
Office by January 12, 2009. NO REFUNDS WILL BE POSSIBLE AFTER                     are responsible for making their hotel reservations and for any subsequent
THIS DATE.                                                                        changes and charges to those reservations.
                                                                                                                                                                    23
         The ALS Association 2009 ANNUAL CONFERENCE Registration Form
              Each conference attendee must complete and return both sides of this Registration Form.
         Please type or print clearly. This form must be accompanied by payment or it will not be processed.
                         Questions about your registration? Email: melissa@alsa-national.org
First Name                                                        Last Name                                                                       M.I.

Mailing Address

City                                                             State/Province                                       Zip/Mail Code

E-mail                                             Telephone (         )                                 Fax (        )

Professional Designation (MSW, RN, PT, etc.)                                          Title/Position

Chapter/Organization/Medical Institution

Badge Information:
Name for Badge-First Name                                                             Last Name

Guest’s Name for Badge-First Name                                                     Last Name

   I/we will be staying at the Marriott Newport Beach Hotel (see Conference Hotel/Reservation information)
I/we will arrive   Date/Time:___________________________________            I/we will depart   Date/Time:___________________________________


Payment Method:                                                            Conference           Received by Received after
                                                                                                                                    At the door          Your fee
                                                                           Registration Fees   Dec. 12, 2008 Dec. 12, 2008
   MasterCard        VISA     American Express       Discover
                                                                           Conference Fee
Credit card #                                                              per Attendee           $325             $425               $525           $_________
Card expiration date ______/_______                                        Guest Attendance
                                                                           Fee (see page 22)      $150             $250               $350           $_________
Name on Card
                                                                           Continuing
Signature                                                                                          $25              $25                $25           $_________
                                                                           Education
                                                                           Processing Fee
Check enclosed, payable to The ALS Association.
                                                                           License #
Mail to: The ALS Association, ATTN: Melissa Gonzalez
         27001 Agoura Road, Suite 250                                      Total Amount Due                                                          $_________
         Calabasas Hills, CA 91301                                                                     (All fees in U.S. dollars)
24                                                             Sessions and Special Event Sign-up
     Please use a check mark ( ), and where required, the code such as #201, to indicate the sessions and events you will attend.
              Please provide complete information for each time segment below. Refer to the program guide inside this
           booklet for session offerings. PLEASE SELECT FROM ONLY LEADERSHIP OR CLINICAL TRACKS;
                                               DO NOT SELECT FROM BOTH.


                             LEADERSHIP TRACK                                                                CLINICAL TRACK
       TIME                          SESSION CHOICES                   ATTENDING     TIME                         SESSION CHOICES             ATTENDING
                                   Thursday, January 22                                                         Thursday, January 22
        7:30 AM - 8:30 AM    Continental Breakfast                                   7:30 AM - 8:30 AM     Continental Breakfast
        8:30 AM - 4:30 PM    Executive Director Program #101                         8:30 AM - 10:30 AM    Sessions #201, 202, or 203
        12:00 PM - 1:15 PM   Combined Luncheon                                       11:00 AM - 12:00 PM   Sessions #201, 202, or 204
        4:30 PM - 5:00 PM    New Executive Director Orientation #102                 12:00 PM - 1:15 PM    Combined Luncheon
                                    Friday, January 23                                1:30 PM - 2:45 PM    Sessions #201, 204, or 205
        7:30 AM - 8:00 AM    Continental Breakfast                                    2:55 PM - 5:00 PM    Session #206
        8:15 AM - 9:30 AM    Conference Kick-off & Welcome                            5:30 PM - 7:00 PM    Patient Services Reception
       10:00 AM - 10:30 AM   Session #103                                                                        Friday, January 23
        10:45 AM- 5:00 PM    Presidents’ Roundtable #104                             7:30 AM - 8:00 AM     Continental Breakfast
       10:45 AM - 12:00 PM   Session #105                                            8:15 AM - 9:30 AM     Conference Kick-off & Welcome
        12:00 PM - 1:30 PM   Combined Luncheon                                       10:00 AM - 12:00 PM   Sessions #207, 208, or 209
        1:30 PM - 3:30 PM    Session #106                                            12:00 PM - 1:30 PM    Combined Luncheon
        3:45 PM - 5:00 PM    Session #107 or 108                                      1:30 PM - 2:30 PM    Session #207
        6:30 PM - 7:15 PM    Exhibitor Reception                                      1:30 PM - 3:30 PM    Sessions #208 or 209
              7:15 PM        Walk Awards Dinner                                       2:30 PM - 3:30 PM    Session #210
                                   Saturday, January 24                               3:45 PM - 4:30 PM    Session #210
        7:00 AM - 8:30 AM    Continental Breakfast                                    3:45 PM - 5:00 PM    Sessions #208 or 209
       8:30 AM - 10:00 AM    Research Update                                          6:30 PM - 7:15 PM    Exhibitor Reception
       10:30 AM - 11:30 AM   Session #109                                                   7:15 PM        Walk Awards Dinner
       11:30 AM- 12:30 PM    Sessions #110 or 111                                                               Saturday, January 24
        12:30 PM - 1:30 PM   Combined Luncheon                                       7:00 AM - 8:30 AM     Continental Breakfast
        1:30 PM - 2:30 PM    Session #112                                            8:30 AM - 10:00 AM    Research Update
        1:30 PM - 3:30 PM    Sessions #113A or 114                                   10:30 AM - 12:30 PM   Sessions #211, 212, or 213
        2:30 PM - 3:30 PM    Session #115                                            12:30 PM - 1:30 PM    Combined Luncheon
        3:45 PM - 5:00 PM    Sessions #113B, 116, or 117                              1:30 PM - 3:30 PM    Sessions #213, 214, or 215
        6:30 PM - 10:00 PM   Annual Conference Awards Banquet                         3:45 PM - 5:00 PM    Sessions #212, 215, or 216
                                                                                     6:30 PM - 10:00 PM    Annual Conference Awards Banquet
Walk to Defeat alS™ track Registration Form                                                            Sessions and Special Event Sign-up
                                                                                                                                                                             25
By registering for the Walk Track, each attendee acknowledges that they are responsible for            Please indicate by check mark ( ) the sessions and events you will attend.
                                                                                                       Please provide complete information for each time segment below. Refer to
attending all Walk Track sessions/events and will only participate in Leadership sessions/events
                                                                                                       the program guide inside this booklet for session offerings.
that are held in conjunction with the Walk Track’s schedule. All attendees MUST complete and
return this registration form prior to the conference. Please type or print clearly all information.    TIME                     SESSION CHOICES                    ATTENDING

Questions? Contact the Walk Office at (312) 932-1133.                                                                              Tuesday, January 20
                                                                                                        12:00 PM - 1:00 PM    Walk Networking Lunch
First Name                                                                                               1:00 PM - 5:00 PM    Session #301A
                                                                                                                                 Wednesday, January 21
Last Name                                                                        M.I.                    7:30 AM - 8:30 AM    Continental Breakfast
                                                                                                        8:30 AM - 12:00 PM    Session #301B
Mailing Address                                                                                         12:00 PM - 1:00 PM    Walk Networking Lunch
                                                                                                         1:00 PM - 5:00 PM    Session #302A
City                                                                                                           7:00 PM        Dinner (Mock Walk Kick-Off Lunch)
                                                                                                                                  Thursday, January 22
State/Province                      Zip/Mail Code                                                        7:30 AM - 8:30 AM    Continental Breakfast
                                                                                                        8:30 AM - 12:00 PM    Session #302B
E-mail                                                                                                  12:00 PM - 1:15 PM    Combined Luncheon
                                                                                                         1:30 PM - 3:30 PM    Session #303
Telephone (            )                            Fax (         )                                      3:45 PM - 5:00 PM    Session #304
                                                                                                                                    Friday, January 23
Title/Position                                                                                           7:30 AM - 8:00 AM    Continental Breakfast
                                                                                                         8:15 AM - 9:30 AM    Conference Kick-off & Welcome
Chapter
                                                                                                        10:00 AM - 10:30 AM   Session #305
                                                                                                        10:45 AM - 12:00 PM   Session #306
 Badge Information:
                                                                                                        12:00 PM - 1:30 PM    Combined Luncheon
  Name for Badge-First Name                                                                              1:30 PM - 3:30 PM    Session #307
                                                                                                         3:45 PM - 5:00 PM    Session #308
 Last Name
                                                                                                         6:30 PM - 7:15 PM    Exhibitor Reception
                                                                                                               7:15 PM        Walk Awards Dinner
       I/we will be staying at the Marriott Newport Beach Hotel
                                                                                                                                  Saturday, January 24
       (see Conference Hotel/Reservation information)
                                                                                                         7:00 AM - 8:30 AM    Continental Breakfast
I/we will arrive    Date/Time:___________________________________                                       8:30 AM - 10:00 AM    Session #309
                                                                                                        10:30 AM - 11:30 AM   Session #310
I/we will depart    Date/Time:___________________________________
                                                                                                        11:30 AM - 12:30 PM   Session #311
                                                                                                        12:30 PM - 1:30 PM    Combined Luncheon
Walk Track Stipend:
                                                                                                         1:30 PM - 3:30 PM    Session #312
There is no fee to attend the Walk Track. One (1) $500 Stipend, generously provided by
                                                                                                         3:45 PM - 5:00 PM    Session #313
Permobil, will be issued to each chapter to aid in covering attendee travel expenses. The
                                                                                                        6:30 PM - 10:00 PM    Annual Conference Awards Banquet
Walk Track is designed for chapter staff with direct Walk responsibilities.
26
                                   2 0 0 9 A NNUAL C ONFERENCE
                             CALL FOR POSTERS
                                                        January 22-24, 2009
                                        Marriott Newport Beach Hotel  Newport Beach, California
     Please consider participating as a poster presenter during this year’s           Please mail, fax, or email a brief abstract (not to exceed one page) of
     conference. Attendees will include healthcare professionals who provide          your poster to:
     care and support to persons with ALS and their families, ALS researchers,
     volunteer leadership, nationwide affiliate staff and others.                     Cynthia Knoche
                                                                                      The ALS Association, National Office
     This “Call for Posters” covers both clinical and non-clinical programs           27001 Agoura Road, Suite 250
     and projects. Non-clinical topics include chapter patient services               Calabasas Hills, CA 91301
     programs, education and awareness campaigns, advocacy efforts and                Fax: (904) 567-5092
     fundraising projects.                                                            Email: cknoche@alsa-national.org

                                     The deadline for poster abstract submission is November 25, 2008.
                                            Poster presenters will be selected and notified by December 5, 2008.
                                        The standard font type and size for poster abstracts is Times New Roman 10.

                                                      CALL FOR POSTERS
              I am interested in submitting a brief abstract for a poster.
              My topic will focus on:      Clinical       Non-clinical           Please send me more information about how to prepare and present posters.

       Name

       Organization/Institution

       Address

       City                                                              State/Province                                  Zip/Mail Code

       Telephone (       )                            Fax (     )                                     E-mail
                                                                                                                                                                                                                 27

                                                                                                      West MacArthur Blvd.
   The ALS Association
                                                                                                                                                           55


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900 Newport Center Drive




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Newport Beach, CA 92660                                                                                                               S




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Phone: (949) 640-4000                                                                                                                           S
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Fax: (949) 640-5055                                                                                                                                      ID
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Newport Beach is approximately 5 miles southwest of the John Wayne/Orange
County Airport and 26 miles south of Long Beach Airport and 45 miles southwest
of the Los Angeles International Airport.

Directions
Complimentary shuttle from John Wayne/Orange County Airport available
at Courtesy Shuttle Stop outside baggage claim area.




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Driving Directions from John Wayne/Orange County Airport to hotel




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Turn right on MacArthur Boulevard. Turn right on Jamboree Road. Turn left on




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Santa Barbara Drive. The hotel will be on the right as you drive up the hill.




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                                                                                                         Santa Barbara Dr.
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Driving Directions from Long Beach Airport to hotel




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Take the 405 Freeway South to 73 Freeway South. Exit on Jamboree. Turn right




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on Jamboree. Turn left on Santa Barbara Drive. The hotel will be on the right as   1                                    Newport




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you drive up the hill.                                                                                                   Beach




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Driving Directions from Los Angeles International Airport to hotel




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Take the 405 Freeway South to 73 Freeway South. Exit on Jamboree. Turn right
on Jamboree. Turn left on Santa Barbara Drive. The hotel will be on the right as                                                           1
you drive up the hill.
The ALS Association would like to acknowledge
Southern California Graphics for their generosity
in printing the 2009 Annual Conference booklet




NATIONAL OFFICE
alsa.org

(818) 880-9007
27001 Agoura Road, Suite 250
Calabasas Hills, CA 91301

				
DOCUMENT INFO
Description: Newport Beach Nonprofit Fundraising document sample