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"CAREGIVER'S JOURNEY"
7TH ANNUAL
A CONFERENCE FOR ALZHEIMER'S CAREGIVERS & HEALTHCARE PROFESSIONALS
Friday, April 21, 2017
Crowne Plaza Hotel
Warwick, RI
Sponsored in part by the Division of Elderly Affairs, RI Department of Human Services, and with funds from the
U.S. Administration on Aging.
Rhode Island Chapter
is proud to be the Keynote Sponsor
Caregiver's Journey 2017 - Alzheimer's Association, Rhode Island Chapter
Every family caregiver knows the shockwave that phone call at 3:00AM can bring. "Have the police found my dad
wandering miles from home - or worse?" "Is mom being disruptive and fighting with staff in her long-term care facility
again?" "Has my sister reached the breaking point taking care of our aging father?" These scenarios are, sadly, too
familiar for the more than 53,000 family caregivers in Rhode Island. We bear an enormous responsibility-equaled only
by our contributions to America's healthcare system. It is estimated that, last year, the nation's almost 15.9 million
family caregivers provided 18.1 billion hours of unpaid care to loved ones with Alzheimer's, eliminating an enormous
institutional burden. This is a contribution to the nation valued at over $221.3 billion. What would happen to the
system if we were no longer able to provide this kind of care to our loved ones? Similarly, professional caregivers -
those who work in assisted living facilities, nursing homes and hospitals, adult day services and community based
programs and as private aides assisting families in their homes - bring a special set of skills and expertise, without
which the system would suffer. (2016 Facts and Figures)
From our 24-hour Helpline (800-272-3900) to our diverse number of support groups, and from our dementia
training for medical professionals to our free care educational seminars, the Chapter rightly places the highest priority
on making sure that caregivers-unpaid and professional-have the tools to get the job done. Whether you are a family
caregiver or you work in an assisted living facility, nursing home, adult day services and community based programs,
hospital or are self- employed, or are new to the field, this conference promises to offer you the best and most
interesting topics and presenters.
Special thanks to our sponsors in part: the Division of Elderly Affairs, RI Department of Human Services, with
funds from the U.S. Administration on Aging, our Keynote Sponsor, Le's Isle Rose at Dave's Marketplace, our Meal
Sponsors, Athena Health Care Systems and Neighborhood Health Plan of Rhode Island, our Session
Sponsors, Brookdale Senior Living Solutions and the University of Rhode Island Geriatric Education Center and Day
Room Sponsors, Concord Home Health, Health Concepts, Ltd., and Rhode Island Mood and Memory Research
Institute. We are pleased to announce our morning address, "Latest in Alzheimer's Research," will be presented by
Maria Carrillo, PhD, Chief Science Office of the National Alzheimer's Association. The conference features our
keynote speaker, Nancy B. Emerson Lombardo, PhD, co-founder of the National Alzheimer's Association and
Alzheimer's Disease International, whose topic is "How What You Eat Affects Your Brain." Again, this year, during
the opening remarks we will have an update on the Rhode Island State Plan on Alzheimer's Disease and Related
Dementias presented by Lieutenant Governor Daniel McKee. In addition, we are offering a variety of workshops
presented by experts in the field of Alzheimer's care and will conclude the day with a special rhythm and motion
workshop, "Bucket Boot Camp." On behalf of our Conference committee, our Board, our staff and most importantly
our people we serve, I thank you for your loyal and consistent support. I look forward to greeting you at the
conference!
Sincerely,
Donna M. McGowan
Executive Director
The Alzheimer's Association Rhode Island Chapter's Caregiver's Journey Conference Committee
has been given the task of selecting high-quality presenters for our seventh annual Caregiver's Journey
conference. This conference is for both caregivers and professionals who dedicate their lives to caring
for people with Alzheimer's Disease (AD) and other dementias. Caregivers are a diverse group. One
size does not fit all. Yet, as different as we are, one aspect unites us: our concern for the quality of care
for the people in our charge. Caring for someone with Alzheimer's disease or a related dementia is truly
a labor of love.
Caregiver's Journey 2017 - Alzheimer's Association, Rhode Island Chapter
7:30AM - 8:30AM Registration Opens, Continental Breakfast, and Visit Vendor Tables
8:30AM - 9:00AM Opening Remarks & Update on Rhode Island Alzheimer's State Plan
9:00AM - 10:00AM Morning Address: "Latest in Alzheimer's Research"
Maria C. Carrillo, PhD.
Chief Science Officer, Medical & Scientific Relations, Alzheimer's Association
Dr. Carrillo is Chief Science Officer, Medical and Scientific Relations, at the Alzheimer's Association. Dr. Carrillo oversees
the international science division for the Alzheimer's Association, and also manages several Association initiatives. One of
these is the Alzheimer's Association International Conference, the largest international discussion on Alzheimer's and related
dementias in the world. Another is the Alzheimer's Association Research Roundtable, which provides a forum for
pharmaceutical companies to discuss trends in Alzheimer research and therapeutic targets.
10:00AM - 10:30AM Break: Visit Vendor Tables
10:30AM - 11:30AM Breakout Session A
A1 Legal and Financial Considerations for Individuals with Young Onset
This session will address the challenges the Young Onset Population, diagnosed under the age of 65 with Alzheimer's disease has when
planning ahead for legal matters and planning for asset protection.
Presenter: Macrina Hjerpe, Esq.
A2 Physical Activity with a Purpose
This workshop will provide strategies to maintain physical function including strength, flexibility and endurance in the
person with Alzheimer’s disease and related dementias to maintain physical functioning and prevent falls.
Presenters: Janice B. Hulme, PT, MS, DHSc, CEEAA, Megan Horton, PT, DPT
A3 Be an Empowered Caregiver
Do you know there are Federal and State funded programs to provide financial assistance, support, and services for Long Term Care?
Do you know how to access them? Do you think you may qualify? If you answered NO to any of these questions, then you need to
attend this workshop.
Presenters: Kelly Lee, MS, Brenda Lee O’Hara, Linnea Tuttle, BS
A4 Becoming an Alzheimer’s Whisperer: A Kind and Loving Approach to Handling Difficult Behaviors
The person afflicted with the disease cannot change, so the Whisperer program’s goal is to bring caregivers to where their
loved one is at each stage of the disease. It is a kind and gentle approach to completing every-day tasks happily for both the client and
caregiver.
Presenters: Nancy Musso, RN, Caroline Naughton Rumowicz, MSHA
A5 Facilitating Reminiscence: A Healing Practice for Clinicians, Patients and Families Experiencing the Impact of Dementia
Establishing and maintaining meaningful communication with those experiencing serious illness, especially those impacted by
dementia is essential. Ms. McCabe will present strategies to enhance communication between people living with dementia and their
care providers to reduce isolation and provide meaning and purpose despite illness and debility. In addition, the presenter will
demonstrate how to facilitate reminiscence with both cognitively intact and cognitively impaired adults.
Presenter: Ellen McCabe, RN
Dr. Carrillo manages the World-Wide Alzheimer's Disease Neuroimaging Initiative, which is a multi-country research effort aimed at finding
biomarkers for early detection of Alzheimer's. Dr. Carrillo has published extensively on early diagnosis and biomarker standardization efforts
in Alzheimer's disease, in addition to global challenges to Alzheimer's and dementia research progress. She is co-author of the NIA-AA revised
criteria for diagnosis of Alzheimer's, and the Appropriate Use Criteria for Amyloid Imaging. She was an Advisory Committee member for The
Shriver Report, and co-editor of Modernizing the Diagnosis of Alzheimer's Disease. In 2014, Dr. Carrillo was the Alzheimer's Expert
Scientific Consultant for the movie Still Alice.
Note: Conference session content targets specific audiences. Please choose your sessions accordingly. Use the legend below as a reference:
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Caregiver's Journey 2017 - Alzheimer's Association, Rhode Island Chapter
11:30AM - 11:45AM Break: Visit Vendor Tables
12:15PM - 1:15PM Keynote Address: "How What You Eat Affects Your Brain"
11:45AM - 12:15PM Lunch
Nancy B. Emerson Lombardo, PhD.
Dr. Emerson Lombardo has worked for over 35 years in Alzheimer's disease and services for older adults. She is a co-
founder of the national Alzheimer's Association and Alzheimer's Disease International and is an internationally recognized
thought leader in interventions to meet the needs of diverse populations. As the President of the Brain Health and Wellness
Center®, and HealthCare Insights, LLC, Dr. Emerson Lombard is committed to helping people and organizations practice
brain healthy lifestyles. She has developed brain healthy lifestyle interventions, including the Memory Preservation
Nutrition® program (MPN™). The MPN™ is implemented in several Assisted Living communities, Houston's Amazing
Place adult day program for people with Alzheimer's disease and other cognitive or brain conditions, and elsewhere.
Evidence is building that indicates brain foods are important for humans at all ages, from infants, children, teenagers, and
adults from 18 to 110! Research tells us that proper nutrition is essential to defending against deterioration due to age and
disease.
1:15PM - 1:35PM Break: Visit Vendor Tables
1:35PM - 2:35PM Breakout Session B
B1 Advances and Crisis Medicaid Planning in Rhode Island: Opportunities Continue To Exist
This session will discuss the two types of Medicaid planning typically available in Rhode Island: Advanced Medicaid
Planning and Crisis Medicaid Planning. The Advanced Planning piece of the session will discuss using irrevocable trusts to protect
assets from long term care costs. The Crisis Planning portion will discuss the options available when no pre-planning has been done and
either a married or single person enters a nursing home. You may be surprised at the opportunities that remain, especially to save assets
for the spouse living at home.
Presenter: Macrina Hjerpe, Esq.
B2 Alzheimer's Disease and LGBT Older Adults: Issues and Strategies
A discussion of issues for LGBT older adults with Alzheimer’s disease, strategies for improving care, and identifying
resources for supporting health care professionals and caregivers of LGBT people with Alzheimer’s disease.
Presenter: Patricia Burbank, D.N.SC., RN, FAAN
B3 Early Onset Alzheimer’s Disease
This session provides an overview of early onset Alzheimer's disease, prevalence, risk, treatments, and how it differs from late-onset.
Psychosocial issues specific to early onset cases will also be discussed.
Presenter: Andrea Sartori, PhD.
B4 Identification and Treatment of Depression in Alzheimer’s Disease and Other Related Dementias
This session will provide an overview of depression in Alzheimer’s disease and other related dementias. This includes the
prevalence of co-occurring depression and dementia, variation in presentation of depressive symptoms from early to late stage
Alzheimer’s disease, and treatment strategies for each stage of the disease.
Presenter: Anne Schwabenbauer, PsyD.
Note: Conference session content targets specific audiences. Please choose your sessions accordingly. Use the legend below as a reference:
Today Dr. Emerson Lombardo serves on the Medical Scientific Advisory Committee for the MA/NH Chapter of the Alzheimer's
Association. Dr. Emerson Lombardo is also Adjunct Research Assistant Professor of Neurology at Boston University School of Medicine
where she is a faculty member of the BU Alzheimer's Disease Center and a former recipient of an Alzheimer's Association grant to study a
combination of nutritional supplements.
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Caregiver's Journey 2017 - Alzheimer's Association, Rhode Island Chapter
B5 Home Sweet Home: Making It Safe
This workshop will discuss how to provide a greater safe and structured environment for the person with dementia living at home. A
focus will be on problem solving ways to maximize function, encourage self efficacy and increase activity while the person with
dementia needs change.
Presenter: Joan Parker, PTA, OTL
B6 Be An Empowered Caregiver
Do you know there are Federal and State funded programs to provide financial assistance? Do you know how to access
them? Do you think you may qualify? If you answered NO to any of these questions, then you need to attend this workshop.
Presenters: Kelly Lee, MS, Brenda Lee O’Hara, Linnea Tuttle, BS
B7 Understanding the Unique Challenges of Veterans with Dementia
This session will discuss what it means for Veterans to have dementia with special attention on strategies to help
caregivers provide better care. Learn how the VA can assist caregivers and the person with dementia.
Presenter: Iva Neupane, MD
2:45PM - 3:45PM Breakout Session C
2:35PM - 2:45PM Break: Visit Vendor Tables
C1 Estate Planning Forget Me Nots For Caregivers
This workshop will discuss some estate planning strategies that should be considered after a loved one has received a diagnosis of
dementia, including the possibility of executing updated powers of attorney for both financial and health care matters. Discussions will
include the need to create or update Wills and Trusts, which can be designed to meet many different planning goals, recognizing that it is
almost always best to discuss your estate planning needs and concerns as soon as possible after the diagnosis and before the disease has
advanced.
Presenter: J. Katherine Scott, Esq
C2 The Basics of Alzheimer's Disease
This workshop will provide an overview of Alzheimer's disease and related dementias. This includes the prevalence of
Alzheimer's disease, stages of progression and examples of symptoms from beginning to late stage.
Presenter: John Stoukides, MD
C3 Personal Comity: Unique (and Not-so-Unique) Considerations for Supporting People with Intellectual Disabilities and Dementia
Participants will be able to discuss characteristics and information regarding Intellectual Disabilities (ID) and dementia and
compare and contrast considerations when supporting people with ID and Dementia.
Presenter: Kathy Service, RN, MS, FNP-BC, CDDN
C4 Creating a Person Centered Care Team
The focus of this program is to establish a solid foundation of care. The value of 3, the person challenged with memory loss, the family
caregiver and the agency or residential team community. The workshop will focus on how to support the transition of new care services,
review successful strategies on how to work as a TEAM and focus on person centered care through any transition of care.
Presenter: Kelly McCarthy, BA, BC-DEd, CDP
C5 Powerful Tools for Caregivers Workshops: The Rhode Island Experience
The workshop will explore the powerful benefits of attending this Nationally acclaimed six week caregiver program and the research
that backs it up. Come and learn why it is important as a caregiver to fill your tool box. Come and hear what former class attendees are
saying about their experience with the Powerful Tools for Caregivers Program.
Presenters: Linda A’Vant-Deishinni, BA and Jo Ellen Mistarz, BA, MA, MBA
Note: Conference session content targets specific audiences. Please choose your sessions accordingly. Use the legend below as a reference:
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Caregiver's Journey 2017 - Alzheimer's Association, Rhode Island Chapter
3:45PM - 4:00PM Break: Visit Vendor Tables
4:00PM - 5:00PM Evaluations and Professional Check-Out/CEU Retrieval
Continuing Education Units are available for each workshop. Please choose workshops based on your discipline to maximize the
number of approved credits you can receive. Participants are required to sign-in, sign-out, and complete individual program Evaluation
Forms for each approved workshop with corresponding CEU's in order to receive credit for workshop attendance. To receive total number
of approved credits you must attend the entire conference.
Nurses
This Education Activity is pending approval for Continuing Education hours by the Northeast Multi-State Division (NE-MSD), an
accredited approver by the American Nurses Credentialing Center's Commission on Accreditation.
Social Workers
This Education Activity is pending approval for Continuing Education hours for Social Work by the National Association of Social Work
Rhode Island Chapter (NASW RI).
4:00PM - 4:30PM Session D
Bucket Boot Camp (All Attendees Welcome)
Come experience how a simple plastic bucket and drumsticks can open the door to coordinated rhythms and motions. Wrap up your day of
learning and come play the "Drums" using buckets as your instrument and create music in a group. Movement is a big part of this
workshop so get ready for fun and physical activity.
Presenter: Rick Morin, Jr.
C6 Renewal Through Art
Experience the benefits art therapy can have on caregiving in this workshop. Art Therapy aims to help one find ways to reduce the
psychological and emotional load of caregiving through enjoying the life affirming pleasure of creating art. No artistic ability or training
required. The aim is to relax, have fun, play with materials and see how the process works.
Presenter: Harriet Winograd, MA
C7 When The Time Comes: To Talk of Death is Easier Than Dying
This workshop is intended to help attendees have a better understanding and confidence in caring for and providing comfort for
someone at the end of life.
Presenter: Rhonda Taddei, RN, BSN, CHPN
Registration and Payment
Deadline: April 11, 2017
Registration includes morning and keynote address, workshops, continental breakfast, lunch, and vendors. The Tiverton Activity Room
is available for persons with memory loss. Application for the Tiverton Activity Room is in this booklet and must be received with
complete registration by Tuesday, April 11, 2017. Early registration is encouraged. Space is limited. There are no same-day
registrations. One registration form per attendee.
There are three ways to register for the 7th Annual "Caregiver's Journey" Conference:
1. Register Online: Visit www.alz.org/ri to complete and submit application.
2. Register by Mail: Send registration form with payment to: Alzheimer's Association-RI Chapter
2017 Caregiver's Journey Conference
245 Waterman Street, Suite 306
Providence, RI 02906
3. Register by Fax: Fax your completed form to 401-421-0115. Please call 800-272-3900 to confirm your fax was received. To avoid
duplication, do not mail your registration if already faxed. 4
Caregiver's Journey 2017 - Alzheimer's Association, Rhode Island Chapter
PROFESSIONAL REGISTRATION
Conference Registration (with CEU's) Conference Registration (No CEU's)
$125 $100
All Attendees Must Select One Choice From Each Session
Session A. 10:30AM - 11:30AM
Choice: ____________________
Session C. 2:45PM - 3:45PM
Choice: ____________________
Session D. 4:00PM -4:30PM
Circle One: Attending; Not Attending
Session B. 1:35PM - 2:35PM
Choice: ____________________
Registration Form - Please Print Legibly
Last Name:______________________________ First Name:______________________________ MI:___________
Street Address:_____________________________City:____________________ State:_________ Zip:___________
Phone:________________________ Email:____________________________________________
Discipline:________________________ Credentials:________________________ CEU:
___LPN ___RN
___Social Work
Check off method of payment:
___Money Order ___Personal Check ___Business Check
___Credit Card
___Visa ___Mastercard ___Discover Card
Card #:_________________________ CV#:________ Exp. Date:________
Signature:__________________________
I________________________________ hereby grant full permission in perpetuity to the organizers of this event to use, re-use, publish and
re-publish my name and image as a participant in the event in photographs, video or other recordings. I have read, understand, and agree to
the terms of this agreement.
Signature:_____________________________________________________________________________ Date:____________________
Registration will not be accepted after the deadline date. Refunds for cancellations will not be granted. Please make
checks, money orders, and purchase orders payable to the Alzheimer's Association, RI Chapter. Registration is not
complete until payment is received. If you would like to pay by credit card, call the Alzheimer's Association, RI
Chapter office at 800-272-3900. Application must be filled out in advance.
Payment
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Caregiver's Journey 2017 - Alzheimer's Association, Rhode Island Chapter
CAREGIVER & PERSON WITH DEMENTIA REGISTRATION
All Attendees Must Select One Choice From Each Session
Session A. 10:30AM - 11:30AM
Choice: ____________________
Session C. 2:45PM - 3:45PM
Choice: ____________________
Session D. 4:00PM -4:30PM
Circle one: Attending; Not Attending
Session B. 1:35PM - 2:35PM
Choice: ____________________
Registration Form - Please Print Legibly
Last Name:______________________________ First Name:______________________________ MI:___________
Street Address:_____________________________ City:____________________ State:_________ Zip:___________
Phone:________________________ Email:____________________________________________
Caregiver (No Charge)
No charge for caregivers or persons with the disease. Please fill out the application, you must register to attend.
Donations are welcome.
I________________________________ hereby grant full permission in perpetuity to the organizers of this event to use, re-use, publish and
re-publish my name and image as a participant in the event in photographs, video or other recordings. I have read, understand, and agree to
the terms of this agreement.
Signature:_____________________________________________________________________________ Date:____________________
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Caregiver's Journey 2017 - Alzheimer's Association, Rhode Island Chapter
APPLICATION FOR TIVERTON ACTIVITY ROOM
If care is needed for your loved one with Alzheimer’s so that you can attend the conference please consider registering them for a full day of
supervised activity. We will be providing a fun filled day in the Tiverton Room while you attend your sessions. Participants will be able to have
breakfast with you and join you again for lunch. Dementia trained personnel will be on hand all day to care for persons with memory loss from
community health agencies. Space is limited to 25 people so register early by completing this form.
Assumption of Risk, Release, PermissionIn consideration of being allowed to participate in the Tiverton Activity Room, I hereby expressly assume all risks of personal injury, death or property loss arising in any way for
my loved one's participation. I represent that my loved one is physically fit and able to participate in this event. I hereby release and agree not to sue Alzheimer's Association, its
chapters, their respective officers, directors, volunteers, employees, sponsors and agents, from or in connection with any and all liability and claims arising out of my loved one's
attendance in this event. I grant full permission to the organization of this event to use and publish my loved one's name and image as a participant in photographs, video, online,
or via other media or recordings.
Signature________________________________ Date______________ I am the spouse and/or responsible party of Participant, and I hereby consent to his/her attendance. I
have read the foregoing agreement and I hereby agree on behalf of my loved one and myself to its terms.
For persons with Memory Loss Available at Caregiver's Journey Conference
Participant's Name:__________________________________________ Participant's Date of Birth:______________________________
Caregiver's Name:______________________________________Caregiver's Day of Conference Contact #:________________________
Caregiver's Relationship to
Participant:________________________________________________________________________________
Participant's Medical History:
__________________________________________________________________________________________________________________
__________________________________________________________________________________________________________________
Does the participant need assistance with ambulating?___________________________________________________________________
Do they use an assistive device? Cane___ Walker___ Wheelchair___
Does the participant have a special diet or require assistance with eating?___________If so, please explain:
__________________________________________________________________________________________________________________
__________________________________________________________________________________________________________________
Allergies to food or medications? If so, please list:
__________________________________________________________________________________________________________________
__________________________________________________________________________________________________________________
Visual Impairments?_____ Hearing loss?_____ Communication difficulties? If so, please explain:
__________________________________________________________________________________________________________________
Does the participant require bathroom assistance?_____Reminder?_____Physical Assistance?
__________________________________
Please list the participant's hobbies & interests past and present:
__________________________________________________________________________________________________________________
Is there anything your loved one would find upsetting?___________________________________________________________________
In the event that your loved one becomes anxious or upset, what do you find helps to comfort them?
__________________________________________________________________________________________________________________
Is there additional information you would like to share to help us make their day a good experience?
__________________________________________________________________________________________________________________Please list the participant's approximate date of diagnosis:__________Participant's Gender:__________
Does participant personally identify as Lesbian, Gay, Bisexual, or Transgender? Yes | No
Please Circle Participant's Highest Level of Education:
Please Circle Participant's Race/Ethnicity:
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Caregiver's Journey 2017 - Alzheimer's Association, Rhode Island Chapter
Additional Demographic Information Required to Complete Registration for All
Conference Attendees (excludes Tiverton Activity Room participants)
Please take a few minutes to complete this form. All information is kept confidential.
Year of Birth:__________
(For questions below, circle answer.)
Gender: Female | Male
Race/Ethnicity:
Do you personally identify as Lesbian, Gay, Bisexual, or Transgender? Yes | No
Highest Level of Education:
Choose the one that best describes you. I am:
Have you or the person you care for been diagnosed with:
Alzheimer's Disease | A Related Dementia | Suspected, but no diagnosis | No Diagnosis
If you or the person you care for has been diagnosed with Alzheimer's disease or a related dementia, please list
the approximate date of diagnosis:__________
Age of Attendee: Under 60 | Age 60-74 | Age 75-84 | Age 85+
If you are a caregiver, please tell us who you are in relation to the person you care for. I am:
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Rhode Island Chapter
245 Waterman Street, Suite 306
Providence, RI 02906
24/7 Helpline
For more information call
1-800-272-3900
or visit www.alz.org/ri
NONPROFIT ORG
U.S. POSTAGE PAID
PROVIDENCE, RI
PERMIT NO. 2484
SAVE THE DATE - 2017 WALK TO END ALZHEIMER'S
Sunday, September 17, 2017 Fort Adams State Park, Newport, RI
Saturday, September 23, 2017 Roger Williams Park, Providence, RI
Sign up today at www.alz.org/ri.
7TH ANNUAL "CAREGIVER'S JOURNEY"
Current Resident Or:
A CONFERENCE FOR ALZHEIMER'S CAREGIVERS & HEALTHCARE PROFESSIONALS
APRIL 21, 2017
CROWNE PLAZA HOTEL WARWICK, RI
Rhode Island Chapter
SAVE THE DATE - 2017 THE LONGEST DAY
June 21, 2017
Sign up at alz.org/thelongestday