2011-2012 Annual Report - Lewy Body Dementia Association

YEARS & COUNTING
2011-2012
Annual Report
(
2 ) LETTER FROM THE PRESIDENT
ABOUT LBDA / PROGRAM HIGHLIGHTS (
About Lewy Body Dementia Association
Dear Friends:
VISION
A cure for Lewy body
dementias and quality
support for those still
living with the disease.
As we turn the page on the year,
I have to recognize that we are
also concluding LBDA’s first
decade of service to those who
have been affected by Lewy Body
dementia. Looking back over our
past annual reports and seeing all the many programs and services
our organization has been able to establish from our Support
Groups and Caregiver links, the wealth of educational material
compiled, our first bio marker conference, and our many efforts to
raise awareness of this disease, I can only hope that the founders of
LBDA would be very proud of the organization we have become.
I believe this is the most appropriate time to acknowledge the
passion and commitment of our many Board members and Staff over
these 10 years, that have been a wonderful example of how so few
can make some much good happen. I want to recognize our hundreds
of volunteers whose dedication and hard work are the backbone of
all that we accomplish. Equally important, we want to thank all those
Individual Donors, Organizations, Foundations, Companies, and
other Associations without whose financial support we would never
have been able to grow into the organization LBDA is today. LBDA
is an organization that is stable, planning for a more successful
future, and more passionate than ever to serve you, our family.
Our next decade is filled with exciting new challenges and
opportunities. We continue to plan and explore new ways to be of
service to all of you. Along with all of your continuing support and
commitment of LBDA, we continue … through outreach, education
and research, to support those affected by Lewy Body dementias.
MISSION
Sincerely,
Through outreach,
education and research,
we support those affected
by Lewy Body Dementias.
The Lewy Body Dementia Association (LBDA) is the only nonproft organization
in the U.S. focused solely on Lewy body dementias. LBDA was founded by LBD
caregivers and today the majority of its Board of Directors are still current or former
LBD caregivers. The LBDA’s Scientific Advisory Council (SAC) is composed of
international leaders in LBD research and clinical management.
Whether you or a friend or family member have been diagnosed with LBD,
or if you are a healthcare or service provider with questions about LBD, we
are here for you and look forward to joining together to advance awareness,
treatment, and information about this disease.
Program Highlights for 2011- 2012
400
More than
2011
1
PEOPLE
MILLION
Ser ved more than
320,000
joined the LBD
Awareness
Movement
unique individuals through our website
and thousands more through outreach
and educational programs
points of ser vice delivered
through all programs
Grew our library of
and ser vices
educational resources
2
nd
Lauched our
+3 NEW
800
Approximately
PUBLICATIONS
people attended
LBDA webinars
major caregiver
research project
Volunteer raised
$30,000
in Boston 5K race
Mike Koehler, Board of Director, President
Lewy Body Dementia Association
2012
1
NEW STAFF MEMBER
Marketing & Communications
Manager
6
MILLION
viewers and listeners tuned
in nationally for a public
service announcement
by Kelsey Grammer
3+
Presence at
clinical and scientific
conferences
3)
(
4 ) TEN YEARS AND COUNTING
TEN YEARS AND COUNTING (
One Family’s Story
Tristan Hancock is 15 years old and lives in Anacoco, Louisana. Four years ago, his father
was diagnosed with Lewy body dementia (LBD) and Parkinson’s disease.
Since then, Tristan, his two older sisters, and his mother have had to cope with his father’s
increasing loss of memory and confusion. His father had to retire from his job in the Texas
oil fields because he was no longer able to drive. As his caregivers, the family has to help
him with such basic functions as getting to the bathroom or tying his shoes.
If your loved one or someone you know has LBD
or Parkinson’s, be prepared for what lies ahead.
It’s not an easy trip. I was to the point to where I was
losing faith fast, but I still pray and hope for the best.
– Tristan Hancock
In addition to forgetfulness, his father experiences anxiety and hallucinations. The more
Tristan learned about LBD and Parkinson’s symptoms, the more scared he became about
what his father and his family were facing. Tristan’s mother turned to the Lewy Body
Dementia Association’s online forum and website www.lbda.org for the most accurate
information on LBD and also told Tristan about LBDStories.com, a website created by
LBDA to provide a place for LBD families to share their stories and pictures. Tristan
shared his family’s story on the website and felt comforted knowing that other families
are dealing with the same issues.
To help his mother and sisters care for his father, Tristan is now home-schooled. Despite
the challenges he and his family are facing, he encourages others to stay strong.
1
2
3
4
5
6
7
8
9
10
July 2003
March 2004
December 2005
January 2006
May 2006
March 2007
October 2008
April 2010
October 2011
March 2012
Officially recognized
Launched toll-free helpline
Awarded $500,000 grant
Held the first “Faces of
Provided testimony at
Co-sponsored first
Presented LBD Caregiver
Funded the Lewy Body
More than 400 volunteers
Advocated for LBD families’
501(c)(3) as only U.S.
providing immediate
from The Mangurian
LBD” National Symposium.
first FDA Advisory Panel
symposium in collaboration
Burden Survey results to
Dementia Biomarker
across the United States
needs at meeting of
Foundation.
Meeting.
with The Mayo Clinic.
nonprofit organization
access to LBD information
Congress on Nonmotor
research program in
joined the LBD Awareness
National Plan to Address
devoted to Lewy Body
for LBD patients and
Symptoms in Parkinson’s
collaboration with
Movement to build public
Alzheimer’s Disease, a
Dementia.
caregivers.
disease, and annual meeting
the Alzheimer’s Drug
awareness and scientific
strategic plan to address
of the American Academy
Discovery Foundation.
education.
Alzheimer’s and related
of Neurology.
dementias.
5)
(
6 ) PARTNERS AND BOARD
Board of Directors
Mike Koehler
President
Shannon McCarty-Caplan
Vice-President
Lisa Allard
Treasurer
Tamara Real
Secretary
Angela Herron
President Emeritus
Board Members
Todd Graham
Debbie McCoy-Massey
James Galvin, M.D.
Max Kaftal
Christina Christie
Norma Loeb
Scientific Advisory Council
The LBDA Scientifc Advisory Council
(SAC) members are international
leaders in LBD research and clinical
management. They provide the most upto-date medical and research information,
which LBDA uses to create in-formative
publications for the general public,
caregivers and the medical profession.
Please visit www.lbda.org
for a complete list of current
SAC members.
FINANCIALS (
Partners
AgingCare.com
Alzheimer’s Association
Georgia Chapter
Alzheimer’s Disease Drug
Discovery Foundation (ADDF)
Alzheimer’s Speaks
American Parkinson’s Disease
Association, Georgia Chapter
The Arbor Company
The CareGiver Partnership
The Caregiver’s Voice.com
The Mangurian Foundation
Caregiving.com
Caregiving Café.com
CVS Caremark
Caring.com
Dementia Today
eCareDiary.com
Emory University
Alzheimer’s Disease Research Center
Fountainview Center for
Alzheimer’s Disease
FTD
Google
National Council of Certified
Dementia Practitioners
National Parkinson’s Foundation
Society of Nuclear Medicine and
Molecular Imaging (SNNMMI)
UC San Diego
Shiley-Marco Alzheimer’s Disease
Research Center –
See more at www.lbda.org
7)
Revenue
20112012
Contributions and Gifts
$ 358,615
$ 484,405
Reclassified Assets
8,600 105,285
Foundation Grants 102,960 57,129
Totals
$470,175
$646,819
76%
75%
Contributions & Gifts
Contributions & Gifts
2%
16%
Reclassified Assets
Reclassified Assets
22%
9%
Foundation Grants
Foundation Grants
Expenses
20112012
Programs
$243,536
$401,943
Support Services
59,302 51,478
Fundraising55,45176,466
Totals
68%
Contributions & Gifts
$358,289
$529,887
76%
Contributions & Gifts
17%
10%
Reclassified Assets
15%
Foundation Grants
Reclassified Assets
14%
Foundation Grants
The complete, audited financial statements for 2011 and 2012 are available at www.lbda.org under “About Us.”
By supporting the work of LBDA, you join in
Increasing Knowledge
Sharing Experience
Building Hope
To learn more about LBD,
visit www.lbda.org
National Office
404·935·6444
www.lbda.org
LBD Caregiver
1·800·LEWYSOS (1·800·539·9767)
support@lbda.org