2nd ANNUAL ALZHEIMER’S DISPARITIES SYMPOSIUM … · 2:30 pm – 4:00 pm Description: Summit attendees will build on the 2016 Disparities Symposium Recap Report and insights generated

2nd ANNUAL ALZHEIMER’S DISPARITIES SYMPOSIUMDiversifying the Race for a Cure and Care

NATIONAL ALZHEIMER’S SUMMIT & HILL DAYUniting Communities for a Cure

OCTOBER 3 – 5, 2017

Ronald Reagan Building and International Trade Center and Capitol HillWashington, DC

TUESDAY, OCTOBER 3, 2017

The Second Annual Alzheimer's Disparities Symposium: Diversifying the Race for a Cure & Care Ronald Reagan Building and International Trade Center

Description: This Symposium will increase awareness, understanding and action on Alzheimer’s impact on communities of color. This full-day program brings together disparities-focused health, policy and minority community stakeholders with caregivers, researchers and industry leaders to address the growing impact of Alzheimer’s on communities of color through the development of health promotion strategies, patient-focused research collaboration, and strategic storytelling and advocacy.

Registration, Breakfast and Networking 8:00 am — 8:55 am

Description: Breakfast will feature multimedia presentations of the impact of dementia on communities of color, featuring UsAgainstAlzheimer’s advocates and the voices of individuals touched by dementia.

Welcome and Introductions8:55 am — 9:00 am

Speakers: • Stephanie Monroe, Executive Director,

AfricanAmericansAgainstAlzheimer’sNetwork

• Jason Resendez, Executive Director,LatinosAgainstAlzheimer’s Network &Coalition

The Alzheimer’s Challenge: Where Are We in the Fight against Alzheimer’s? 9:00 am — 9:05 am

Speakers: • George Vradenburg, Co-Founder and Chairman, UsAgainstAlzheimer’s

Views shared by our panelists are their own and do not indicate an endorsement of products or services by UsA2 or other panelists/Summit participants.

Conversation: Innovative Models for Navigating the Alzheimer’s Journey9:05 am — 9:30 am

Description: This conversation will explore a first-of-its-kind certificate program that will train individuals in Camden, New Jersey, to support individuals with Alzheimer’s disease, providing navigation services to individuals, families and caregivers managing the disease.

MODERATOR / PANELISTS:

• Moderator: Mary Michael, VP, Patient Advocacy and Stakeholder Management, Otsuka America Pharmaceutical, Inc.

• Michellene Davis, Esq., Executive Vice President & Chief Corporate Affairs Officer, RWJ Barnabas Health

• Kris Kolluri, Chief Executive Officer, Rowan University/ Rutgers-Camden Board of Governors

PANEL AND DISCUSSION I

What Matters Most? The Role of Patient-Centered Research in Addressing Alzheimer’s & Brain Health Disparities 9:30 am — 10:25 am

Description: This panel will explore how patient and community-engaged research can advance our understanding of brain health disparities. The panel will highlight strategies for engaging patients and caregivers in research, identifying community research priorities, and for developing community-anchored research partnerships to address brain health disparities impacting communities of color.


• Moderator: Goldie Byrd, PhD, Founding Director, Center for Outreach in Alzheimer’s, Aging, and Community Health; Professor of Biology, North Carolina A&T State University (INVITED)

• Joyce (Joy) E. Balls-Berry, PhD, Assistant Professor of Epidemiology; Program Manager, Office for Community Engagement in Research, Center for Clinical and Translational Science, Mayo Clinic

• Daisy Duarte, Caregiver; Clinical Trial Volunteer, Dominantly Inherited Alzheimer Network (DIAN) Study

• Julie Kennedy Lesch, MPA, Engagement Officer, Patient-Centered Outcomes Research Institute (PCORI)

• Jaime Perales, PhD, Postdoctoral Fellow, University of Kansas Alzheimer’s Disease Center; Representative, Memory Strings Kansas City Alliance

PANEL AND DISCUSSION II

Let’s Talk about Alzheimer’s: Messages and Tools for Promoting Brain Health and Research Opportunities in Diverse Communities 10:25 am — 11:25 am

Description: This panel discussion will provide an overview of the latest efforts by researchers, government agencies and community organizations to promote brain health, research opportunities and healthy aging in communities of color. Presenters will share actionable insights for mobilizing and educating diverse communities through tailored messaging and community outreach campaigns that resonate, change behavior and drive action. Attendees will learn lessons and messages to apply in their own work.

MODERATOR / PANELISTS: • Moderator: Debra Jones, President, Tequity

• Gwen Gates, Sr. Community Health Programs Representative, Alzheimer’s Disease Center, University of California, Davis

• David Marquez PhD, Associate Professor, University of Illinois at Chicago; Lead Investigator, Latino Core Study, Rush Alzheimer’s Disease Core Center

• Mark Odom, LCSW, Vice President, Programs and Education, Alzheimer's Orange County

LUNCH & LEARN: Utilizing Media and the Creative Arts to Connect Communities, Reduce Stigma and Advance Alzheimer’s Research11:25 am — 12:30 pm

Description: This panel will explore how media and the creative arts can be effectively leveraged to break down barriers, reduce

stigma, and bring Alzheimer’s Out of the Shadows in communities of color. The panel will highlight the power of embracing culture to connect with communities. Attendees will come away with a better understanding of how to leverage the media and the arts in their respective work to educate communities, support caregivers, and give voice to the voiceless about Alzheimer’s and the need for greater participation in research.


• Moderator: Stephanie Monroe, Executive Director, AfricanAmericansAgainstAlzheimer’s Network

• Marita Golden, Author and Journalist

• Margarita Gomez, Latino Outreach Manager, Alzheimer’s Greater Los Angeles

• Yvonne Latty, Professor and Multimedia Journalist, Arthur L. Carter Journalism Institute, NYU

• Loretta Veney, Author and Caregiver

PANEL AND DISCUSSION III

The Role of Technology, Data and Mapping in Understanding and Address Health Disparities

12:30 pm – 1:30 pm

Description: This panel will highlight the innovative efforts of researchers and the private sector to leverage technology to educate diverse communities about diseases like Alzheimer’s, to support caregivers and to increase access to research. The panel will also explore the role of data mapping and visualization in helping public health practitioners and policymakers better understand and address health disparities impacting communities of color.


• Moderator: Sarah Hoit, CEO & Co-Founder, Connected Living, Inc.

• Madeleine Shea, Ph.D., Deputy Director of Office of Minority Health, Centers for Medicare & Medicaid Services

• Vis Naidoo, Chief Ed Tech, Cell-Ed

• Jack Harrison-Quintana, Director, Grindr for Equality

• Nihal Satyadev, CEO & Co-Founder, The Youth Movement Against Alzheimer's

PANEL AND DISCUSSION IV

Caregiver & Patient Reflections across Cultures & Generations 1:30 pm – 2:30 pm

Description: This discussion will feature the varied experiences of Alzheimer’s and dementia care partners and patients from different cultures, generations and geographies — with the aim of better understanding their needs around support, training and research.

Opening Remarks: Nii-Quartelai Quartey, EdD, Senior Advisor, Multicultural Leadership, AARP


• Moderator: Meryl Comer, President and CEO of Geoffrey Beene Foundation Alzheimer's Initiative; Board Member, UsAgainstAlzheimer’s

• Lisette Carbajal, Family Caregiver; LatinosAgainstAlzheimer's Advocate; Featured, Crowd and the Cloud Series

• Kamaria Moore-Hollis, Family Caregiver, featured by The Genius of Caring

• Yvette Peña, Vice President, AARP, Multicultural Leadership, Hispanic/Latino Audience Strategy; Family Caregiver

• Brian Van Buren, Patient Advocate; Dementia Action Alliance Advisory Council

From Talk to Action: Being the Change We Want to See2:30 pm – 4:00 pm

Description: Summit attendees will build on the 2016 Disparities Symposium Recap Report and insights generated throughout the day to break into three working groups to 1.) Identify potential topics and questions for research collaboration 2.) Provide input on national efforts to outreach and recruit local and diverse populations into Alzheimer’s clinical research.

DISCUSSION FACILITATORS:

• Laura D. Baker, PhD, Associate Professor, Gerontology andGeriatric Medicine, Wake Forest Baptist Medical Center

• Jonathan Jackson, PhD, Cognitive Neuroscientist, Instructor ofNeurology, Harvard Medical School; Departments of Neurology atMassachusetts General Hospital and Brigham & Women’s Hospital

• William Vega, PhD, Executive Director, USC Edward R. RoybalInstitute on Aging, USC Suzanne Dworak-Peck School of SocialWork; Provost Professor, University of Southern California (USC)

Groups Report-Out4:00 pm – 4:30 pm

Closing Call to Action & Next Steps 4:30 pm – 4:45 pm

Depart for Congressional Reception — 106 Dirksen Senate Office Building 4:45 pm

This symposium was made possible by support from Otsuka America Pharmaceutical, Inc. and was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (4192-USAA).

National Alzheimer’s Summit – Congressional Reception 5:30 pm – 7:00 pm

Description: This National Alzheimer’s Summit event on Capitol Hill will serve as a galvanizing welcome to Summit attendees, while providing the opportunity for members of Congress to address the ways they are making Alzheimer’s a priority at the local and national levels. Our speakers will give toasts in honor of attendees and the vital role each plays in demanding attention for this disease. Constituents living with Alzheimer’s and caregivers will introduce their respective Senators. At the reception, we will announce our newest Network, VeteransAgainstAlzheimer’s.

SPECIAL PERFORMANCE:

“The Star-Spangled Banner” — Performed by Arnold Fields, Major General, U.S. Marine Corps

WELCOME:

George Vradenburg, Chairman and Co-Founder, UsAgainstAlzheimer's

ANNOUNCEMENT:

Launch of VeteransAgainstAlzheimer’s with

• Shawn Taylor, President, VeteransAgainstAlzheimer's;Board Member, UsAgainstAlzheimer's

• Ryan M. Gallucci, Director, National Veterans Service,Veterans of Foreign Wars of the United States

TOASTS:

• Senator Shelley Moore Capito (R-WV)

• Senator Susan Collins (R-ME)

• Senator Kamala D. Harris (D-CA) (INVITED)

• Senator Ed Markey (D-MA)

• Senator Thom Tillis (R-NC)

• Senator Mark Warner (D-VA) (INVITED)

• Senator Roger Wicker (R-MS)

• Phyllis Ferrell, VP and Alzheimer’s Disease Global Platform Leader, Eli Lilly and Company

Location: Dirksen Senate Office Building, Room 106

Nearest entrance: Constitution Ave, NE & First St, NE

Accessible entrance: First & C Streets, NE

WEDNESDAY, OCTOBER 4, 2017

NATIONAL ALZHEIMER’S SUMMIT

Ronald Reagan Building and International Trade Center

Registration, Breakfast and Networking8:00 am — 8:15 am

Kickoff Session: Uniting Communities for a Cure 8:15 am — 8:45 am

Description: Framing the day, this session will enumerate policy priorities, as well as the core UsA2 goals and theories of change to drive progress towards a cure. The introduction will reflect the inspirational quote from UsAgainstAlzheimer’s late Co-Founder and Vice-Chair, Trish Vradenburg: “A cure for Alzheimer’s: a fantasy, a wish, an impossible dream; the same words that were said to Galileo, Edison, Curie, Salk and whoever dreamed up the internet. Yesterday’s dream is today’s reality.”

FACILITATORS:

• George Vradenburg, Chairman and Co-Founder, UsAgainstAlzheimer’s

• John Dwyer, President, Global Alzheimer’s Platform Foundation; Board Member, UsAgainstAlzheimer’s

Growing the Alzheimer’s Movement: Learning from Others 8:45 am — 9:45 am

Description: This panel will draw insights and key learnings from leaders from influential movements and successful social-change efforts, such as breast cancer, teen and young adult pregnancy prevention, HIV and social justice for Latinos. The session will include perspectives on how the Alzheimer’s movement may evolve or learn from other movements. Ultimately it will help answer the question: how can Alzheimer’s advocates and leaders motivate policy makers and other stakeholders to work together to effect transformational change?

MODERATOR/PANELISTS:

• Moderator: Mike McCurry, Former White House Press Secretary; Distinguished Professor and Director, Center for Public Theology, Wesley Theological Seminary

• Nancy Brinker, Founder and Board Member, Susan G. Komen

• Rita Carreón, Deputy Vice President, Institute for Hispanic Health, UnidosUS

• Veronica Miller, PhD, HIV Forum and Executive Director, Forum for Collaborative Research, HIV Reform

• Isabel V. Sawhill, PhD, Senior Fellow, Economic Studies, Center on Children and Families, Brookings Institution; Board President, National Campaign to Prevent Teen and Unplanned Pregnancy

Hill Day Asks: This discussion may touch on all of our policy priorities: increased federal research funding; Medicare policies that create incentives for greater rates of detection and diagnosis; support for families and family caregivers; increased citizen engagement in clinical trials; and efficient, timely approval of and reimbursement for new therapies. Among our policy asks, particularly relevant to this session are:

• An increase in funding for the NIH of at least $414 million for the federal government’s Fiscal Year 2018 (October 2017–September 2018).

• Support for comprehensive Alzheimer’s legislation that is designed to accelerate advances in diagnosis, clinical research and care

Participants Attending Hill Day should pick up their materials in the Pavilion Foyer at the Reagan Building. Please consult with our policy experts, on hand from 11:30 am to 1:00 pm and 2:30 pm to 4:00 pm to answer your questions.

Alzheimer’s Economic and Social Impact on America’s Families 9:45 am — 10:45 am

Description: This panel will discuss the major economic and social impacts of Alzheimer’s disease at both the micro (family) and macro (society) levels, delivering a comprehensive and holistic view of the ballooning cost of caring for and treating Alzheimer’s. Panelists will reflect on their stories and the personal impact of the disease, characterizing the disease’s financial effect on family members and caregivers representing multiple generations and diverse communities.


• Moderator: Jill Lesser, Chief Strategy Officer, UsAgainstAlzheimer’s; President, WomenAgainstAlzheimer’s; Board Member, UsAgainstAlzheimer’s

• Nicholas Eberstadt, PhD, Henry Wendt Chair in Political Economy, American Enterprise Institute (AEI)

• Edna Kane-Williams, Senior Vice President, AARP

• Bert Rea, Managing Director, Human Capital, Deloitte Consulting

• William Vega, PhD, Executive Director, USC Edward R. Roybal Institute on Aging, USC Suzanne Dworak-Peck School of Social Work; Provost Professor, University of Southern California (USC); Board Member, UsAgainstAlzheimer’s

Hill Day Asks: We will eradicate the broad social and economic burdens of Alzheimer’s only when we eradicate the disease. However, policy initiatives to promote early and accurate diagnosis and personalized care for patients and their care partners will significantly lessen these burdens in the meantime. Our relevant policy asks include:


• Support for comprehensive Alzheimer’s legislation designed to accelerate advances in diagnosis, clinical research and care

Where Are We on the Path to 2025? Part I: The Alzheimer’s Drug Pipeline and Industry Trends10:45 am — 11:45 pm

Description: This panel is a sequel to last year’s highly-regarded session featuring insights from industry, academia, government and researchers on progress made in drug development, and highlighting updates on promising drugs and innovations in the pipeline. This year, the panel will integrate commentary on the need for the modernization of Alzheimer’s drug approval standards, as well as emphasize robust participation in clinical trials, offering solutions to help increase enrollment and educate audiences about the impact and importance of clinical trials, and will address issues relating to access to diagnostics and treatments.


• Moderator: Debra Lappin, JD, Principal, Faegre Baker Daniels Consulting

• Billy Dunn, MD, Director, Office of Drug Evaluation - Division of Neurology Products, U.S. Food and Drug Administration

• Samantha Budd Haeberlein, PhD, Vice President and Head of Alzheimer’s Clinical Development, Biogen

• Eliezer Masliah, MD, Director, Division of Neurosciences, National Institute on Aging

• David Morgan, PhD, CEO/Executive Director and Director, Translational Research, USF Health Byrd Alzheimer’s Institute; Distinguished Professor of Molecular Pharmacology and Physiology, University of South Florida; Founding Member, ResearchersAgainstAlzheimer’s

• An increase in funding for the NIH of at least $414 millionfor the federal government’s Fiscal Year 2018 (October 2017–September 2018).

Hill Day Asks: Essential to advancing the progress toward effective drug treatments are initiatives that will foster and streamline Alzheimer’s clinical research and that will ensure that patients receive appropriate therapies in a timely, accessible manner. Our relevant policy asks include:

• Support for comprehensive Alzheimer’s legislation, particularly to establish standard tools for early and accurate Alzheimer’s diagnosis and to establish compensation for care partners — both of which would alleviate burdens that are involved in clinical trial participation

• Regulatory proposal (not a Hill Day ask): Support for clarifying FDA guidance to enable approval of drugs to delay or prevent onset of symptoms, not just drugs to treat cognition and function after symptoms appear

LUNCH: The Movement to Conquer Alzheimer's: Creating the Tipping Point 11:45 am to 1:00 pm Pick up Box Lunch in the Foyer: 11:45 to Noon Lunch Keynote and Q/A: Noon to 12:30 12:30 pm to 1:00 pm: Informal Lunch with Other Participants

• Keynote Speaker: Bill Novelli, Professor and Founder, Global Social Enterprise Initiative, McDonough School of Business, Georgetown University; Former CEO, AARP; Founder, Campaign for Tobacco-Free Kids; co-founder and former President of Porter Novelli

• Community Convenings: After the keynote, attendees are invited to enjoy an informal lunch with fellow participants.

Panel: Where Are We on the Path to 2025? Part II: Early and Accurate Detection and Diagnosis1:00 pm to 2:00 pm

Description: This panel will tackle the issue of diagnosing Alzheimer’s early and accurately, allowing patients and caregivers the opportunity to adjust their lifestyles, to manage related co-occurring conditions, to plan their care support networks and to afford physicians the means to track the progression of a person’s brain health over time. The discussion will focus on strategies and technologies for early detection, the need to train clinicians, the importance of early diagnosis in development of therapies, and the patient and care partner perspective.


• Moderator: Ronald C. Petersen, MD, PhD, Professor of Neurology, Cora Kanow Professor of Alzheimer’s Disease Research and Director, Mayo Alzheimer’s Disease Research Center, Mayo Clinic Clinic College of Medicine; Chair, Principal Investigator, Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network

• Daisy Duarte, Caregiver; Clinical Trial Volunteer, Dominantly Inherited Alzheimer Network (DIAN) Study

• Phyllis Ferrell, VP, Global Late-Stage Alzheimer’s Therapeutic and Diagnostic Team; Alzheimer’s Disease Global Platform Leader, Eli Lilly and Company

• Gay Johnson, Chief Executive Officer, National Association of Nurse Practitioners in Women’s Health

• Jane Kim, MD, MPH, VA National Center for Health Promotion and Disease Prevention, U.S. Department of Veterans Affairs

• Brad O’Connor, CEO, Cogstate

Hill Day Asks: This session will touch on initiatives that clear the path for practitioners and patients, to make access to Alzheimer’s screening, detection and early diagnosis the standard of care . Our relevant policy ask includes:

• Support for the provisions of comprehensive Alzheimer’s legislation related to establishing standard tools for diagnosis

Panel: Brain Health and Alzheimer’s Prevention2:00 pm — 3:00 pm

Description: This panel will focus on risk-reduction strategies and lifestyle interventions, as well as raise issues of brain health with providers and prevention steps that may improve brain health. We will explore the idea that what is good for the heart is good for the brain. How can a focus on brain health translate to clinical trials and increased interest in medical research? What can we each do to reduce dementia risk?


• Moderator: Susan Spencer, Editor in Chief, Woman’s Day

• Laura Baker, PhD, Associate Director, NIA Wake Forest Alzheimer’s Disease Core Center

• Sandra Bond Chapman, PhD, Founder and Chief Director, Center for BrainHealth™, The University of Texas at Dallas; Founding Member, WomenAgainstAlzheimer’s

• Elli Kaplan, Co-Founder and CEO, Neurotrack

• Melinda Power, ScD, Asst. Professor, Epidemiology and Biostatistics, George Washington University

• David Satcher, MD, PhD, Founding Director and Senior Advisor, Satcher Health Leadership Institute, Morehouse School of Medicine; 16th Surgeon General of the United States; Former Director, CDC; Board Member, UsAgainstAlzheimer’s

• Brian Van Buren, Retired Flight Attendant, Living with EOAD

Hill Day Asks: Initiatives that promote the understanding of the importance of healthy living and access to cognitive screening are important to promoting brain health and Alzheimer’s prevention. Our relevant policy asks include:


• Support for comprehensive Alzheimer’s legislation relating to establishing standard tools for diagnosis.

Panel: Innovations in Care and Support of Those Living with Alzheimer’s and Care Partners3:00 pm — 4:00 pm

Description: This session will explore how caregiving for those with Alzheimer’s and dementia can be supported and improved through innovations in technology. Panelists will provide insights on various technology-based tools and applications that can support both the individual living with Alzheimer’s and their care partner, including access to clinical research, transportation and care management.


• Moderator: Meryl Comer, UsAgainstAlzheimer’s Board Member; Co-Founder, WomenAgainstAlzheimer’s; President and CEO, Geoffrey Beene Foundation Alzheimer’s Initiative

• Kim Campbell, Founder, CareLiving.org; Wife of Glen Campbell

• Joe Cuticelli, CEO, Seniors, North America, Sodexo

• Karen Garner, Caregiver, Author, Missing Jim: Confessions of an Alzheimer's Wife

• Sarah Hoit, CEO and Co-Founder, Connected Living, Inc.

• Lakelyn Hogan, MBA, Gerontologist and Caregiver Advocate, Home Instead Senior Care

• Nate O’Keefe, Co-Founder and CEO, Roobrik

Hill Day Asks: Promoting innovation through public-private partnerships and increasing access to care through care payment reform will help enable advances in care and support to reach the greatest number of patients and their care partners. Our relevant policy asks include:

• Support for comprehensive Alzheimer’s legislation to improve access to Alzheimer’s care and to reform the current payment model for Alzheimer’s care.

Wrap-Up: Capturing Our Key Actions4:00 pm — 4:15 pm

Description: We will briefly summarize the day’s key takeaways, aligning insights with UsA2’s goals and pillars and helping to inform future programming and advocacy.

Facilitator: • George Vradenburg, Chairman and Co-Founder,

UsAgainstAlzheimer’s

• Congresswoman Debbie Dingell (D-MI) (INVITED)

• Representative Bill Foster, Dr. (D-IL) (INVITED)

• Congresswoman Nancy Pelosi (D-CA)

• Congressman Chris Smith (R-NJ) (INVITED)

• Congresswoman Maxine Waters (D-CA) (INVITED)

Location: Rayburn House Office Building, Room 2044

Nearest entrance: Independence Ave, SW, between First St, SW & South Capitol St, SE

Accessible entrance: same as above

9:30 am — 3:00 pmCapitol Hill Meetings

Description: We will storm Capitol Hill to press for increased federal research dollars and key reforms relating to Alzheimer’s diagnosis, research and care.

Location: U.S. Senate and House of Representatives office buildings.

12:00 pm — 1:00 pmFrom Discovery to Delivery: Research at Work Against Alzheimer’s Disease. (For those not at Hill appointments)

Description: Sponsored by Research!America with UsAgainstAlzheimer's as a co-sponsor. Featuring Shawn Taylor. Box Lunches Provided.

Location: Rayburn House Office Building, Room 2175

Nearest entrance: Independence Ave, SW, between First St, SW & South Capitol St, SE

Accessible entrance: same as above

3:00 pmSummit Concludes

Description: Summit participants are free to depart after their last scheduled congressional meeting.

For more information:

202.349.3803

UsAgainstAlzheimers.org

Facebook.com/UsAgainstAlz

@UsAgainstAlz

#UsA2Summit17

2nd ANNUAL ALZHEIMER’S DISPARITIES SYMPOSIUM … · 2:30 pm – 4:00 pm Description: Summit attendees will build on the 2016 Disparities Symposium Recap Report and insights generated

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