ian kremer
TRANSCRIPT
Aging 2.0 www.USAgainstAlzheimers.org
www.leadcoali8on.org May 20, 2013
Alzheimer’s Disease Projec8ons: Incidence, Cost of Alzheimer’s Care, and Federal Research Funding
Sources: Alzheimer’s Study Group, A Na%onal Alzheimer’s Strategic Plan: The Report of the Alzheimer’s Study Group (March 2009); Alzheimer's AssociaBon, Changing the Trajectory of Alzheimer's Disease: A Na%onal Impera%ve (May 2010); NaBonal InsBtutes of Health Office of the Budget website.
Cost of Care People in US with Alzheimer’s
Source: Alzheimer’s Associa%on calcula%ons based on NIH data
ber of Deaths
Source: Alzheimer’s Associa%on 2011 Alzheimer’s Disease Facts and Figures and Alzheimer’s Associa%on calcula%ons based on NIH data
Change in Number of Deaths 2000-‐2008
Who We Are
• A community of engaged and enraged individuals united by our frustraBon at a broken status quo
• Dedicated to mobilizing individuals to demand the urgency, passion and commitment needed by our poliBcal, policy, business and civic leaders to achieve the goal of ending Alzheimer’s by 2020
O Our Theory of Change and a Bold O Opera8ng Model – Disrupt the sluggish ‘business as usual’ pace of
Alzheimer’s progress
– Catalyze the development and availability of promising treatments
– Pressure our poliBcal, policy, business and civic leaders to devote the necessary resources to discovering treatments and cures.
Through our Networks … we are catalyzing influencers and ac8vists to further accelerate our and their progress and ensure Alzheimer’s receives the na8onal aTen8on it deserves
Form a Galvanizing Public-‐Private Partnership that Enforces Aligned Ac8ons to Meet the Common Goal
Compression
HHS NIH ACL
FDA
Leaders Engaged on Alzheimer’s Disease (LEAD) Coali8on
Leaders Engaged on Alzheimer’s Disease (LEAD) is a diverse and growing naBonal coaliBon of 58 member organizaBons and numerous partnering organizaBons commiZed to collaboraBvely acceleraBng transformaBonal change in Alzheimer's disease and related disorders care, support, and research.
LEAD believes that Alzheimer’s disease and related disorders present a moral imperaBve for urgent acBon at a scale comparable to the grave and growing threat facing our naBon and the world.
LEAD works to change both public sector policy and private sector pracBce.
LEAD member organizaBons include paBent advocacy and voluntary health non-‐profits, philanthropies and foundaBons, trade and professional associaBons, academic research and clinical insBtuBons, and biotechnology and pharmaceuBcal companies.
LEAD Coali8on Member Organiza8ons
Abe’s Garden Alliance for Aging Research
Alzheimer's & DemenBa Alliance of Wisconsin
Alzheimer’s Drug Discovery FoundaBon
Alzheimer’s FoundaBon of America
Alzheimers North Carolina Alzheimer's Tennessee
American Academy of Neurology
American AssociaBon for Geriatric Psychiatry
American AssociaBon for Long Term Care Nursing American Geriatrics Society
American Life Sciences PharmaceuBcals, Inc.
American Medical Directors AssociaBon American Public Human Services AssociaBon
Assisted Living FederaBon of America
Banner Alzheimer’s InsBtute
BrightFocus Alzheimer’s Disease Research
Bristol Myers Squibb
Caregiver AcBon Network
Cleveland Clinic CogniBon TherapeuBcs
CriBcal Path InsBtute/CoaliBon Against Major Diseases Cure Alzheimer’s Fund
Direct Care Alliance
Eisai Co., Ltd.
Elan
Eli Lilly and Company
FasterCures Geoffrey Beene FoundaBon Alzheimer’s IniBaBve Gerontological Society of America
Global CoaliBon on Aging
Inspire
InsBtute of Medicine
Iona Senior Services
Janssen Alzheimer Immunotherapy
Keep Memory Alive FoundaBon LaBno Alzheimer’s and Memory Disorders Alliance LeadingAge
Linked Senior, Inc
Mayo Clinic
Memory Enhancement Center of America, Inc. Merck & Co., Inc.
NaBonal Alliance for Caregiving
NaBonal AssociaBon of States United for Aging and DisabiliBes NaBonal Caucus and Center on Black Aged, Inc.
NaBonal Consumer Voice for Quality Long-‐Term Care NaBonal Council on Aging
NaBonal Down Syndrome Society NaBonal Task Group on Intellectual DisabiliBes and DemenBa PracBces
Pat SummiZ FoundaBon Pfizer, Inc.
Project Lifesaver InternaBonal
USAgainstAlzheimer’s
USF Health Byrd Alzheimer InsBtute
Vradenburg FoundaBon
VisiBng Nurse AssociaBons of America Volunteers of America
LEAD Coali8on Ac8vi8es
Member Communica8ons • NewsleZer • Website • AcBon Alerts • MeeBngs & Conference Calls • Stakeholder Dialogue
Private Sector Collabora8on • Rapid Response Team • Clinical Trial Recruitment • NaBonal InsBtuBonal Review Board • Quality Care • Community Services • Awareness & SBgma • Access & AdopBon
Government Advocacy • Federal-‐State-‐Local • Stop Alzheimer’s PeBBon • TesBmony • Public Comments • Sign-‐on LeZers • EducaBng Public Officials
Workgroups to advance Na8onal Alzheimer’s Plan implementa8on • Research and Drug Discovery • Long Term Supports • Clinical Care
Technology to Combat Demen8a
Globalized Research • Research/Clinical Trial Databases
• Registries
– Mining Big Data
– Clinical Trial Recruitment
• Pre-‐compeBBve Data Sharing/CDISC
Clinical PracBce • Health IT
• Telemedicine
• ConBnuing EducaBon
Care and Support • SBgma and Awareness
• Long Distance Care
• e-‐Resources
