YEARS & COUNTING - Lewy Body Dementia …...Association, Georgia Chapter The Arbor Company The...
Transcript of YEARS & COUNTING - Lewy Body Dementia …...Association, Georgia Chapter The Arbor Company The...
YEARS & COUNTING
2011-2012 Annual Report
1NEW STAFF MEMBERMarketing & Communications
Manager
1MILLION
points of ser vice delivered through all programs
and services
Served more than
320,000unique individuals through our website and thousands more through outreach
and educational programs
Lauched our
2nd major caregiver research project
More than
400PEOPLEjoined the LBD
Awareness Movement
Approximately
800people attended LBDA webinars
Presence at
3+clinical and scientific
conferences
Dear Friends:
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.
Sincerely,
Mike Koehler, Board of Director, PresidentLewy Body Dementia Association
ABOUT LBDA / PROGRAM HIGHLIGHTS ( 3 )( 2 ) LETTER FROM THE PRESIDENT
VISION
A cure for Lewy body
dementias and quality
support for those still
living with the disease.
MISSION
Through outreach,
education and research,
we support those affected
by Lewy Body Dementias.
About Lewy Body Dementia AssociationThe 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
Grew our library of educational resources
+3 NEW PUBLICATIONS
Volunteer raised
$30,000in Boston 5K race
6MILLION
viewers and listeners tuned in nationally for a public service announcement
by Kelsey Grammer
20112012
TEN YEARS AND COUNTING ( 5 )( 4 ) 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.
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.
July 2003 March 2004 December 2005 May 2006 March 2007 October 2008 April 2010 October 2011 March 2012January 2006
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
Officially recognized
501(c)(3) as only U.S.
nonprofit organization
devoted to Lewy Body
Dementia.
Launched toll-free helpline
providing immediate
access to LBD information
for LBD patients and
caregivers.
Awarded $500,000 grant
from The Mangurian
Foundation.
Provided testimony at
first FDA Advisory Panel
Meeting.
Held the first “Faces of
LBD” National Symposium.
Co-sponsored first
symposium in collaboration
with The Mayo Clinic.
Presented LBD Caregiver
Burden Survey results to
Congress on Nonmotor
Symptoms in Parkinson’s
disease, and annual meeting
of the American Academy
of Neurology.
Funded the Lewy Body
Dementia Biomarker
research program in
collaboration with
the Alzheimer’s Drug
Discovery Foundation.
More than 400 volunteers
across the United States
joined the LBD Awareness
Movement to build public
awareness and scientific
education.
Advocated for LBD families’
needs at meeting of
National Plan to Address
Alzheimer’s Disease, a
strategic plan to address
Alzheimer’s and related
dementias.
1 62 73 84 95 10
FINANCIALS ( 7 )( 6 ) PARTNERS AND BOARD
Board of Directors
Mike KoehlerPresident
Shannon McCarty-CaplanVice-President
Lisa AllardTreasurer
Tamara RealSecretary
Angela HerronPresident Emeritus
Board Members
Todd GrahamDebbie McCoy-MasseyJames Galvin, M.D.Max KaftalChristina ChristieNorma Loeb
Scientific Advisory Council
The LBDA Scientifc Advisory Council (SAC) members are international leaders in LBD research and clinical management. They provide the most up-to-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.
Partners
AgingCare.com Alzheimer’s Association Georgia Chapter Alzheimer’s Disease Drug Discovery Foundation (ADDF)Alzheimer’s SpeaksAmerican Parkinson’s Disease Association, Georgia Chapter The Arbor CompanyThe CareGiver Partnership The Caregiver’s Voice.com The Mangurian FoundationCaregiving.comCaregiving Café.comCVS CaremarkCaring.comDementia TodayeCareDiary.com Emory UniversityAlzheimer’s Disease Research CenterFountainview Center for Alzheimer’s Disease FTDGoogleNational Council of Certified Dementia PractitionersNational Parkinson’s Foundation Society of Nuclear Medicine and Molecular Imaging (SNNMMI)UC San DiegoShiley-Marco Alzheimer’s Disease Research Center –
See more at www.lbda.org
Revenue 2011 2012
Contributions and Gifts $ 358,615 $ 484,405 Reclassified Assets 8,600 105,285 Foundation Grants 102,960 57,129
Totals $ 470,175 $ 646,819
The complete, audited financial statements for 2011 and 2012 are available at www.lbda.org under “About Us.”
Expenses 2011 2012
Programs $ 243,536 $ 401,943 Support Services 59,302 51,478 Fundraising 55,451 76,466
Totals $ 358,289 $ 529,887
75% Contributions & Gifts
76% Contributions & Gifts
76% Contributions & Gifts
68% Contributions & Gifts
16% Reclassified Assets
10% Reclassified Assets
2% Reclassified Assets
17% Reclassified Assets
9% Foundation Grants
14% Foundation Grants
22% Foundation Grants
15% Foundation Grants
By supporting the work of LBDA, you join in
Increasing KnowledgeSharing Experience
Building Hope To learn more about LBD,
visit www.lbda.org
National Office404·935·6444www.lbda.org
LBD Caregiver 1·800·LEWYSOS (1·800·539·9767)[email protected]