YEARS & COUNTING Annual Report

Transcription

1 YEARS & COUNTING Annual Report

2 ( 2 ) LETTER FROM THE PRESIDENT ABOUT LBDA / PROGRAM HIGHLIGHTS ( 3 ) 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. 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 0 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, President Lewy Body Dementia Association About Lewy Body Dementia Association 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 MILLION points of service delivered through all programs and services Lauched our 2 nd major caregiver research project More than 400 PEOPLE joined the LBD Awareness Movement Grew our library of educational resources +3 NEW PUBLICATIONS Volunteer raised $30,000 in Boston 5K race 202 Served more than 320,000 unique individuals through our website and thousands more through outreach and educational programs Approximately 800 people attended LBDA webinars NEW STAFF MEMBER Marketing & Communications Manager 6 MILLION viewers and listeners tuned in nationally for a public service announcement by Kelsey Grammer Presence at 3+ clinical and scientific conferences

3 ( 4 ) TEN YEARS AND COUNTING TEN YEARS AND COUNTING ( One Family s Story Tristan Hancock is 5 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 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 January 2006 May 2006 March 2007 October 2008 April 200 October 20 March 202 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 50(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)

4 ( 6 ) PARTNERS AND BOARD FINANCIALS ( 7 ) 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 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 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 Revenue Contributions and Gifts $ 358,65 $ 484,405 8,600 05,285 Expenses 02,960 57,29 Totals $ 470,75 $ 646,89 76% 2% 22% Programs $ 243,536 $ 40,943 Support Services 59,302 5,478 Fundraising 55,45 76,466 Totals $ 358,289 $ 529,887 68% 7% 75% 6% 9% 76% 0% 5% 4% The complete, audited financial statements for 20 and 202 are available at under About Us.

5 By supporting the work of LBDA, you join in Increasing Knowledge Sharing Experience Building Hope To learn more about LBD, visit National Office LBD Caregiver 800 LEWYSOS ( ) support@lbda.org