Foundations 2026 conference logo — patient advocacy and pharma partnerships
 

The Premier Forum For Patient Advocacy Organizations to Advance Scientific Discovery and Patient Care

October 28-29, 2026
Hilton Arlington, Arlington, VA

 

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The first conference to teach patient advocacy organizations how to build effective programs and collaborations with industry and federal agencies to accelerate therapeutic development

There are more than 22,000 patient advocacy organizations in the United States. These organizations have ground-level, continuous contact with millions of people living with disease or medical disorders, and they are desperate for cures and treatments.

Imagine a future where patient advocacy professionals are equipped with the tools and knowledge to become pivotal players in groundbreaking research partnerships.

That future starts at Foundations. Over two days in Arlington, you’ll gain the frameworks, relationships, and practical tools to strengthen your organization’s role in the full therapeutic ecosystem.

Why patient advocacy partnerships matter for therapeutic development

Why It Matters

Therapeutic development is increasingly dependent on strong patient-centered partnerships. Patient Advocacy Organizations can dramatically reduce trial risk, improve recruitment, and strengthen real-world evidence by:

  • Mobilizing patient communities for clinical trial enrollment
  • Supporting pediatric and adult study participation
  • Providing natural history data and lived-experience insights
  • Reducing operational uncertainty for sponsors
  • Enhancing trial design through community-informed approaches

 

Is It For You?

Foundations brings together the full therapeutic ecosystem. Whether you lead a Patient Advocacy Organization, work inside pharma/biotech, represent a federal agency, or design clinical trials — this conference was built for you.

Patient Advocacy Organizations

Create or expand your support of medical research, your work with pharma and biotech, and your advocacy initiatives.

Pharma & Biotech

Build authentic, productive nonprofit partnerships and strengthen your pipeline through patient community engagement.

Federal Agencies

Advance patient-centered therapeutic development and strengthen collaboration across the advocacy ecosystem.

Clinical Trial Professionals

Design and manage clinical trials that benefit from community-informed approaches and meaningful PAO collaboration.

Newer to the PAO Ecosystem

Get a clear, practical roadmap to get started and build the relationships that move the needle.

Foundations conference agenda designed for the entire advocacy ecosystem

Designed for the Entire Advocacy Ecosystem

Built around the real-world needs of advocacy organizations, the Foundations agenda delivers practical, actionable insights for every stakeholder in the ecosystem—from patient advocacy leaders and nonprofit teams to researchers, medtech partners, and federal regulators .

From understanding the research pipeline and building research-ready organizations, to forming high-impact partnerships and navigating NIH/FDA engagement, each session is intentionally designed to meet attendees where they are and help them drive meaningful scientific progress.

Our Chairperson

 
Allison Feldman

Allison Feldman

 

Chief Executive Officer

Speaking Faculty

 
Anne Hubbard

Anne Hubbard

 

Chief Public Policy Officer

Erika Sward

Erika Sward

 

Chief Advocacy Officer

Raymond Puerini

Raymond Puerini

 

Director

Diane Bovenkamp

Diane Bovenkamp, PhD

 

Vice President, Scientific Affairs

Katie Kroner

Katie Kroner

 

Vice President of Advocacy and Patient Engagement

Elizabeth Joseloff

Elizabeth Joseloff

 

Vice President, Quality Care & Research

Kevin Heyen

Kevin Heyen

 

VP of Development and Industry Relations

Jenna Riemenschneider

Jenna Riemenschneider

 

Vice President of Advocacy and Policy

Shana Dodge

Shana Dodge, PhD

 

Director of Research Engagement

Steven Newmark

Steven Newmark

 

Chief Legal & Policy Officer

Ian Kremer

Ian Kremer

 

Executive Director

Courtney Wallin

Courtney Wallin

 

Federal Policy Director

Brandi Underwood

Brandi Underwood

 

Executive Director

Keith N. Fargo

Keith N. Fargo, PhD

 

Director of Scientific Initiatives

Susan Ruediger

Susan Ruediger

 

Co-Founder, Chief Mission Officer

Lena Fung

Lena Fung, MJ

 

Director of Development

Deborah Fowler

Deborah Fowler

 

President and Founder

Cynthia Steel

Dr. Cynthia Steel, PhD, MBA

 

Chief Scientific Officer

Julie Kurek

Dr. Julie Kurek

 

Associate Professor of Neurology- Movement Disorders

Susan Brisendine

Susan Brisendine

 

Vice President, Partnerships and Innovation

Sandra Heibel

Sandra Heibel, PhD

 

Chief of Science and Regulatory Affairs

Eric Gascho

Eric Gascho

 

Vice President

Jean Campbell

Jean Campbell

 

Co-Founder and Board Director

Interested in Becoming Part of the Speaking Faculty?

Conference Agenda

Two full days of practical, actionable sessions for every stakeholder in the patient advocacy ecosystem.

8:00 AM
Networking
Breakfast and Registration
9:00 AM
Chairperson's Opening Remarks
Allison Feldman
Allison Feldman
CEO · Lewy Body Dementia Association
9:10 AM
Keynote
Powering Progress: The Evolution and Impact of Patient Advocacy
  • Understanding the U.S. landscape of Patient Advocacy Organizations (PAOs)
  • The unique value PAOs bring to industry, academia, and government partnerships
  • How strategic collaboration accelerates research, innovation, and patient outcomes
Allison Feldman
Allison Feldman
CEO · Lewy Body Dementia Association
9:30 AM
Decoding the Research Pipeline: Maximizing Advocacy Impact in Research 
  • What are the stages of medical research 
  • Where can PAOs have impact 
  • What drives decision-making 
Sandra Heibel
Sandra Heibel, PhD
Chief, Scientific and Regulatory Affairs · Haffner Associates ,LLC
10:00 AM
Partnering with Payers: How PAOs can address Access to Care Challenges
  • Overview of MACs and Medicare Advantage
  • Finding coverage policies and ways to engage
  • Identifying advocacy partners
  • What's in it for them?
Anne Hubbard
Anne Hubbard
Chief Public Policy Officer · American Parkinson Disease Association
10:30 AM
Break
Networking Break
10:45 AM
Science as a Team Sport:  Building High-Impact Partnerships
Diane Bovenkamp
Diane Bovenkamp, PhD
Vice President, Scientific Affairs · BrightFocus Foundation
11:00 AM
Building Research Powerhouses:  Programs That Accelerate Discovery and Improve Care
  • Research centers of excellence
  • Centers of care
  • Patient registries
  • Other programs that engage industry

Keith Fargo
Keith N. Fargo, PhD
Director of Scientific Initiatives · Lewy Body Dementia Association
Shana Dodge
Shana Dodge, PhD
Director of Research Engagement · The Association for Frontotemporal Degeneration
Elizabeth Joseloff
Elizabeth Joseloff
Vice President, Quality Care & Research · Pulmonary Hypertension Association
Cynthia Steel
Cynthia Steel, PhD, MBA
Chief Scientific Officer · Glaucoma Research Foundation
12:30 PM
Networking
Networking Lunch
1:30 PM
Interactive Session
Becoming Research-Ready: An Interactive Blueprint for Success

This 90-minute interactive session introduces the Research Partnership Maturity Model (RPMM), a toolkit from FasterCures designed to help patient organizations assess their strengths and enhance their role in advancing research. Participants will gain practical insights into evaluating their capabilities and identifying opportunities for growth as research partners.

Raymond Puerini
Raymond Puerini
Director · Milken Institute
3:00 PM
Break
Networking Break
3:15 PM
De-risking innovation: How PAOs Can Move Research Forward 
  • Strategic programs that pass compliance 
  • De-risking research for industry partners 
  • How to get the work done 
Susan Brisendine
Susan Brisendine
Vice President, Partnerships and Innovation · NephCure Kidney International
3:45 PM
Right-sized Impact: Aligning Ambition with resources
  • Understanding your community needs
  • Establishing Priorities: Where to Lead and What to Back-Burner
  • Considering collaborations: A force-multiplier
  • Avoiding risks 
Deborah Fowler
Deborah Fowler
President and Founder · Soft Bones
Jean Campbell
Jean Campbell
Co-Founder and Board Director · Professional Patient Advocates in Life Sciences
4:30 PM
Networking
Networking Reception
5:00 PM
End of Day One
8:00 AM
Networking
Networking Breakfast
8:50 AM
Chairperson's Recap and Opening Remarks
Allison Feldman
Allison Feldman
CEO · Lewy Body Dementia Association
9:00 AM
Keynote
Beyond the Exam Room: Building Influence, Community and Change
Julie Kurek
Julie Kurek, M.D.
Associate Professor of Neurology- Movement Disorders · Augusta University Health
9:30 AM
From Policy to Patients: Navigating Federal Agencies for Impact 
  • What are the structures of the NIH, FDA, and CDC 
  • What are the stages of legislation and where can PAOs make an impact 
  • What is an advocacy consultant and how can they help a PAO leverage their resources to make change 
Eric Gascho
Eric Gascho
Vice President · CRD Associates
Erika Sward
Erika Sward
Chief Advocacy Officer · USAgainst Alzheimer's
10:30 AM
Policy Headwinds and Tailwinds: Positioning PAOs for Success 
  • How today’s political landscape is impacting medical research and your PAO 
  • How can you move your mission forward and mitigate risk 
Steven Newmark
Steven Newmark
Chief Legal & Policy Officer · Global Healthy Living Foundation
11:00 AM
Break
Networking Break
11:15 AM
Two Decades of Advocacy: Hard-Won Lessons for PAOs
Katie Kroner
Katie Kroner
Vice President of Advocacy and Patient Engagement · Pulmonary Hypertension Association
11:45 AM
Strength in Numbers: How Coalitions Elevate Advocacy
  • What are coalitions and how can they help elevate an organization’s advocacy efforts
  • How to ensure a coalition aligns with your needs, mission, and goals
Ian Kremer
Ian Kremer
Executive Director · Leaders Engaged on Alzherimer's Disease Coalition
12:15 PM
Networking
Networking Lunch
1:30 PM
Building Your Advocacy Engine: Strategy, Focus and Execution
  • How to determine your PAOs priorities in terms of advocacy
  • How to determine where your PAO should lead, join, or follow
Jenna Riemenschneider
Jenna Riemenschneider
Vice President of Advocacy and Policy · Asthma and Allergy Foundation of America
2:00 PM
Punching Above Your Weight: Advocacy for Growing PAOs
Courtney Wallin
Courtney Wallin
Federal Policy Director · Leaders Engaged on Alzherimer's Disease Coalition
Jenna Riemenschneider
Jenna Riemenschneider
Vice President of Advocacy and Policy · Asthma and Allergy Foundation of America
Brandi Underwood
Brandi Underwood
Executive Director · International FoxP1 Foundation
Deborah Fowler
Deborah Fowler
President and Founder · Soft Bones
2:45 PM
Break
Networking Break
3:00 PM
Unlocking Funding: A Compelling Case for Support 
  • Making the case for funding 
  • How to engage private foundations 
  • Fee for service and other revenue-generating programs with Industry Sponsorships 
  • How to align Industry’s needs with your PAOs priorities 
Lena Fung
Lena Fung, PhD
Director of Development · Lewy Body Dementia Association
Kevin Heyen
Kevin Heyen
VP of Development and Industry Relations · Pulmonary Hypertension Association
3:45 PM
See You Next Year
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See the full agenda, confirmed speakers, and sponsorship opportunities for the first-of-its-kind forum 

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20+ Confirmed speakers
 
2 days
 
1st Inaugural forum
Lewy Body Dementia Association American Parkinson Disease Association BrightFocus Foundation UsAgainstAlzheimer's Asthma & Allergy Foundation of America Global Healthy Living Foundation

Pricing

Register early to secure the best rate. Choose your category below.

501(c)3 Rate
Patient Organization · Professional Advocate · Academics · Government
Fixed Rate — All Qualifying Organizations
$1,095
Register Now
Bio/Pharma · Law Firms · Service Providers · Consultants
Early Bird Rate
Register by August 28, 2026
$2,895
Save $200
Advanced Rate
Register by October 9, 2026
$2,995
Save $100
Standard Rate
Register after October 9, 2026
$3,095
 
Register Now
 

Venue

 

Hilton Arlington

950 North Stafford Street

Arlington, VA 22203, US

Please note there is only one official, exclusive housing block for this event. Any other channels for booking reservations are not authorized. If you are contacted by a 3rd party housing company claiming to have a relationship with Momentum Events Group LLC, its event and/or Hilton Arlington; these companies and others like it are not in any way affiliated with us.

Hilton Arlington hotel — Foundations 2026 conference venue in Arlington, Virginia

Sponsor

 

Gold Sponsor

Bronze Sponsor

Why Sponsor?

 

Sponsors gain direct access to the organizations that shape patient communities and influence trial success.

Foundations offers:
 • High-visibility brand placement among mission-driven leaders
 • Direct relationship-building with nonprofits across multiple disease areas
 • Opportunities to co-create sessions, workshops, and case studies
 • Access to a pipeline of potential partners for recruitment, data, and trial readiness
 • Positioning as a champion of patient-centered therapeutic development

Supporting Foundations signals a commitment to accelerating cures through collaboration — not just innovation.

Sponsorship opportunities are limited, so contact us today for more information!

Access the Sponsorship Prospectus
165W25-Sponsorship Prospectus
 

Frequently Asked Questions

 

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