Alpha1 and You: Events

Building Community, Raising Awareness, Changing Lives—Together

By Mark Egly Foundation

The Power of Coming Together

When people affected by Alpha-1 Antitrypsin Deficiency gather—everything changes.

Knowledge increases. Confidence grows. Isolation ends. Hope multiplies. Standards of care shift. Lives are saved.

Alpha1 and You Events are The Mark Egly Foundation's commitment to bringing together patients, families, physicians, researchers, advocates, and supporters in meaningful ways that educate, empower, and energize the entire AATD community.

Why Events Matter

When Alpha1 IQs go up, so will the confidence of Alphas increase—and their outlooks for their health and their futures will improve dramatically.

Events are where:

🎓 Education happens - Learning from experts in accessible, engaging formats
🤝 Connections form - Meeting others who truly understand your journey
💡 Ideas spark - Discovering new approaches to managing health and life
🏥 Care improves - Physicians learn directly from patient experiences
🔬 Research advances - Patients meet researchers and join studies
💪 Advocacy begins - Individual voices unite into powerful movements
❤️ Hope renews - Seeing others thrive reminds us that thriving is possible

The Current Reality

For decades, AATD has been considered extremely rare. Less than 10,000 individuals were ever diagnosed worldwide under the old paradigm that AATD only affects lungs and livers severely.

The result?

Tiny, scattered support groups
Limited awareness even within medical communities
Patients feeling isolated and alone
Minimal research funding
Stagnant standards of care
Families suffering without answers

The Coming Transformation

When we go from less than 10,000 individuals ever diagnosed to millions—as Mark's discoveries suggest we should—you will see massive growth in:

✨ Support Groups

From a handful to thousands worldwide
In-person groups in every major city
Online communities spanning the globe
Specialty groups (parents, athletes, young professionals, etc.)
Language-specific groups reaching diverse populations

✨ Knowledge & Education

Comprehensive patient education programs
Medical school curriculum integration
Public awareness campaigns
Cultural shift in how AATD is understood
Media coverage bringing AATD into mainstream consciousness

✨ Research & Treatment

Massive increase in research funding
Hundreds of clinical trials
New treatment options and approaches
Faster path to prevention and cure
Innovation driven by market demand

✨ Medical Care

Physicians in every specialty knowledgeable about AATD
Clinical Resource Centers in every region
Standard protocols for diagnosis and treatment
Insurance coverage expanding dramatically
Preventive care becoming the norm

✨ Advocacy & Policy

Powerful patient advocacy organizations
Legislative action on newborn screening, treatment access, research funding
Changed standards of care across medical specialties
Global recognition of AATD's true prevalence and impact

It all starts right here with our Foundation—and with events that bring us together!

🎯 Signature Annual Events

Alpha1 Summit

The Premier Annual Gathering for the AATD Community

What It Is: A multi-day conference bringing together patients, families, physicians, researchers, pharmaceutical representatives, policymakers, and advocates for comprehensive AATD education, networking, and advocacy planning.

Who Should Attend:

AATD patients at any stage of their journey
Family members and caregivers
Healthcare providers seeking AATD expertise
Researchers studying AAT and related conditions
Industry partners developing treatments
Policy advocates working on healthcare access
Anyone passionate about changing AATD outcomes

What Happens:

Keynote Presentations - Leading experts sharing latest research and clinical advances
Patient Education Sessions - Understanding AATD, treatment options, lifestyle optimization
Physician Training Tracks - CME-accredited programs for medical professionals
Research Symposium - Presentation of cutting-edge studies and findings
Family Programming - Support and education for children and family members
Exhibit Hall - Treatment options, resources, technology, support services
Support Group Meetups - Regional groups connecting face-to-face
Advocacy Workshops - Training to change policy and standards of care
Social Events - Building community through shared meals, activities, celebration
Clinical Trial Recruitment - Meeting researchers and learning about study opportunities

2026 Alpha1 Summit: [Location] - [Dates] - Registration Opening Soon

AATD Awareness Week

Seven Days to Change How the World Sees Alpha-1

When: [Annual dates - potentially April during Lung Health Awareness Month]

What It Is: A week-long campaign combining virtual events, local gatherings, media outreach, and advocacy actions to dramatically raise awareness of AATD among the public and medical professionals.

Daily Themes:

Monday: What is AATD? - Educational blitz on basics
Tuesday: Beyond Lungs - The systemic nature of AATD
Wednesday: Family Matters - Genetic screening and inheritance
Thursday: Treatment & Hope - What's available and what's coming
Friday: Physician Education Day - CME programs for providers
Saturday: Patient Stories - Real people sharing real journeys
Sunday: Advocacy Action Day - Coordinated actions for policy change

How to Participate:

Host or attend local awareness events
Share your story on social media (#Alpha1AwarenessWeek)
Request AATD testing from your doctor
Educate your community about AATD
Contact legislators about newborn screening
Donate to AATD research and advocacy
Wear teal (AATD awareness color) all week

Annual Uniting Doctors Symposium

Where Physicians Learn to Change Standards of Care

What It Is: An intensive medical education event bringing together physicians across all specialties to learn about AATD's systemic effects, diagnostic approaches, treatment protocols, and how to integrate AATD awareness into clinical practice.

Format:

CME-accredited presentations
Case study discussions
Multi-specialty panels
Clinical protocol workshops
Research updates
Patient panels sharing medical journeys
Networking with AATD medical experts

Target Audience:

Primary care physicians
Pulmonologists
Hepatologists
Rheumatologists
Neurologists
Oncologists
Gastroenterologists
All medical specialties

Impact: Physicians leave with knowledge, confidence, and tools to identify AATD in their patients, potentially saving hundreds of lives over their careers.

Alpha1 Research Day

Advancing Science, Accelerating Cures

What It Is: A day dedicated to sharing research findings, fostering collaboration, and connecting patients with studies that need participants.

Sessions Include:

Poster presentations from researchers
Grant award announcements
Clinical trial overviews and recruitment
Patient registry enrollment
Research funding priorities discussion
Collaboration matchmaking for investigators
Patient input on research directions

Why It Matters: Patient participation drives research forward. Research Day makes it easy to get involved.

📍 Regional & Local Events

Monthly Alpha1 Meetups

Local Support, National Network

Format: Casual, in-person gatherings of AATD patients and families in cities across the country/world.

Typical Activities:

Coffee shop conversations
Support group discussions
Guest speaker presentations
Restaurant meetups
Outdoor activities (walks, parks, etc.)
Family-friendly events
Seasonal celebrations

Finding Your Local Group: Visit our website for the Alpha1 Meetup Directory or start a group in your area (we provide support!).

Quarterly Educational Workshops

Deep Dives into AATD Topics

Topics Rotate Through:

"AATD 101: Newly Diagnosed Orientation"
"Understanding Your Genotype and What It Means"
"AAT Augmentation Therapy: Is It Right for You?"
"Lung Health Optimization Strategies"
"Living with AATD: Lifestyle and Wellness"
"Family Screening: Protecting Your Loved Ones"
"Navigating Insurance and Financial Assistance"
"Advanced AATD: Understanding Research and New Treatments"

Format: 2-3 hour interactive sessions with expert presenters and Q&A.

Location: Hybrid (in-person and virtual attendance options).

Walk for Alpha1

Steps for Awareness, Funds for Research

What It Is: Community walk/run events raising awareness and funds for AATD research, education, and patient support.

Event Features:

1-mile, 5K, and 10K routes
Family-friendly activities
Health screenings and education booths
Team competitions
Survivor/thriver recognition
Community building
Fun!

Impact: Funds raised support Foundation programs and research grants.

How to Participate: Join a walk in your area, form a team, or organize a Walk for Alpha1 in your community.

💻 Virtual Events & Webinars

Monthly Expert Webinar Series

Learn from Anywhere

Topics Include:

Latest research findings explained
Treatment updates and new options
Specialist Q&A sessions (pulmonology, hepatology, etc.)
Lifestyle and wellness guidance
Insurance and financial navigation
Mental health and coping strategies
Advocacy skills training

Format:

45-60 minute presentation
Live Q&A with expert
Recorded for later viewing
Free to attend

Schedule: First Thursday of each month at 7pm ET

Weekly Virtual Support Groups

Connection Without Leaving Home

Groups for Different Needs:

Newly Diagnosed Support Circle
Treatment Journey Group
Parents of Children with AATD
Young Adults with AATD
Caregivers and Family Support
Advanced Disease Support
Thriver's Circle (long-term success stories)
Spanish-speaking support group
[Other language groups as demand grows]

Format: Video conference, small group (8-12 people), facilitated discussion, confidential.

Schedule: Multiple times weekly to accommodate different time zones and schedules.

Ask the Expert Live

Your Questions, Answered in Real-Time

What It Is: Monthly live-stream Q&A sessions where patients can ask questions directly to AATD specialists, researchers, or experienced patients.

Rotating Experts:

AATD pulmonologists
Hepatologists
Genetic counselors
Nutritionists specializing in AATD
Mental health professionals
Insurance navigation experts
Long-term thriving patients

Format: Submit questions in advance or live, get immediate answers, recorded for future viewing.

🎓 Educational Events

AATD 101 Orientation Sessions

For the Newly Diagnosed

Frequency: Monthly, first Saturday of each month

What You'll Learn:

What AATD is and how it affects the body
Understanding your specific genotype
What testing and monitoring you need
Treatment options available
Family screening importance
Resources and support available
Next steps in your AATD journey

Format: 2-hour virtual or in-person session, small group, plenty of time for questions, connection with peer mentors.

Cost: Free

Registration: Required (we want to prepare materials specific to participants' genotypes)

Living Well with AATD Workshop Series

Practical Skills for Better Health

Workshop Topics:

"Breathing Techniques and Pulmonary Rehabilitation"
"Anti-Inflammatory Nutrition for AATD"
"Exercise Without Fear: Safe Fitness for Lung Health"
"Stress Management and Mental Wellness"
"Travel Safely with AATD"
"Intimacy and Relationships with Chronic Illness"
"Career Navigation with AATD"
"Financial Planning and Insurance Mastery"

Format: Hands-on, interactive, leave with practical tools and action plans.

Physician Education Days

Training the Trainers

Target Audience: Medical residents, fellows, practicing physicians, nurses, respiratory therapists, physician assistants, medical students.

CME Credits: Available for all sessions

Content Includes:

Systemic effects of AATD across organ systems
When to test: Clinical indicators and high-risk populations
Interpreting AAT levels and genotypes
Treatment guidelines and emerging therapies
Managing AATD patients long-term
Coordinating multidisciplinary care
Patient perspectives on living with AATD

Impact: Each trained physician can identify and help dozens of undiagnosed patients over their career.

🏥 Clinical & Screening Events

Free AATD Testing Days

Removing Barriers to Diagnosis

What We Provide:

Free blood draw for AAT level testing
Free genetic testing if levels are low
Genetic counseling interpretation of results
Connection to AATD specialists if diagnosed
Family screening coordination

Who Should Get Tested:

Anyone with chronic respiratory symptoms
People with unexplained liver problems
Those with autoimmune conditions
Family members of anyone with AATD
Anyone with family history of early-onset chronic disease

Locations & Dates: Announced on our events calendar—watch for testing events in your area!

Partnership: Often held in collaboration with hospitals, health fairs, and community organizations.

Clinical Resource Center Open Houses

Meet Your AATD Care Team

What They Are: Events at AATD Clinical Resource Centers introducing patients to comprehensive AATD care.

What Happens:

Tour of facilities
Meet physicians, nurses, respiratory therapists, support staff
Learn about available services
Understand what comprehensive AATD care looks like
Individual consultations available
Support group meetings
Educational presentations

Goal: Connecting patients with expert, coordinated care.

🎤 Advocacy Events

AATD Advocacy Day

Your Voice, Amplified

What It Is: A coordinated day of advocacy action where AATD community members contact legislators, testify at hearings, meet with policymakers, and push for change.

Focus Areas:

Universal newborn screening for AATD
Expanded insurance coverage for AAT therapy
Increased federal research funding
Patient protections and healthcare access
Medical education requirements
Workplace protections for chronic illness

How to Participate:

In-person visits to legislative offices (we coordinate and train)
Phone/email campaigns from home
Social media advocacy using provided toolkits
Testimony at public hearings
Meeting with insurance companies
Engaging with media

Impact: Collective voices create change. Previous advocacy efforts have resulted in [specific policy wins].

Patient Story Sharing Sessions

Your Experience Creates Change

What They Are: Events where patients share their AATD journeys with audiences who need to hear them—medical students, practicing physicians, policymakers, media, the public.

Why It Matters: Personal stories change hearts and minds. They:

Make statistics human
Educate in memorable ways
Inspire action and empathy
Challenge misconceptions
Demonstrate impact of policy decisions

Training Provided: We help you craft and deliver your story effectively and comfortably.

Opportunities: Medical schools, conferences, legislative hearings, media interviews, documentaries, awareness campaigns.

🔬 Research Participation Events

Clinical Trial Information Sessions

Understanding Your Research Options

What They Are: Events where researchers present active clinical trials, explain what participation involves, answer questions, and facilitate enrollment for interested patients.

Topics Covered:

What the study is investigating
Eligibility criteria
What participation involves (time, procedures, etc.)
Potential benefits and risks
How to enroll if interested
Protections for research participants

Why Attend: Clinical trials offer:

Access to cutting-edge treatments
Close medical monitoring
Contribution to advancing AATD science
Potential personal benefit

Patient Registry Enrollment Events

Your Data Drives Discovery

What They Are: Opportunities to enroll in AATD patient registries that collect long-term health data to advance research.

Why It Matters: Registries provide researchers with:

Natural history data
Treatment outcome information
Patterns and trends
Recruitment pools for future studies

What's Involved: Periodic surveys, occasional data sharing from your medical records (with your permission), connection to research opportunities.

Incentives: Some registries offer compensation, free testing, or other benefits.

2026 Preview

January

New Year Vision Setting Webinar (Virtual)
AATD 101 Orientation (Virtual + Select Cities)
Coffee Chats Resume (Ongoing)

February

World Rare Disease Day Events (Global)
Expert Webinar: Latest Research Updates (Virtual)
Regional Support Group Kickoffs (Multiple Cities)

March

Physician Education Day (Multiple Locations)
Family Screening Drive
Clinical Trial Information Session (Virtual)

April

AATD Awareness Week (Global)
Walk for Alpha1 Events (Multiple Cities)
Free Testing Days (Select Locations)

May

Alpha1 Summit 2026 (Major City TBD)
Living Well Workshop Series Begins
Advocacy Day (State Capitals)

June

Alpha1 Family Day Events (Regional)
Graduate Support Group (for Young Adults)
Breathe Easy Summer Webinar Series Begins

July

Regional Picnics and Gatherings
Mid-Year Research Update
Clinical Resource Center Open Houses

August

Back to School Support (Parents & Teachers)
Workplace Wellness Webinar
Travel with AATD Workshop

September

Fall Fundraiser Galas (Multiple Cities)
Newly Diagnosed Orientation Sessions
Physician CME Programs

October

Respiratory Health Month Focus
Flu Vaccine Clinics for AATD Patients
Insurance Open Enrollment Help Sessions

November

Annual Uniting Doctors Symposium
Gratitude Gatherings
Year-End Research Presentations

December

Holiday Celebrations (Virtual & Regional)
Year in Review Event
2027 Planning Community Input Sessions

Detailed calendar with dates, locations, and registration information available at markeglyfoundation.com/events

Attend Events

Stay Informed:

Subscribe to our events newsletter
Follow us on social media (@MarkEglyFoundation)
Check the website calendar regularly
Join our community platform for event notifications

Bring a Friend: Many find it helpful to attend with a support person, and you might introduce someone to information that changes their life.

Host an Event

Want to organize an Alpha1 event in your community? We provide:

Planning guides and toolkits
Marketing materials and templates
Speaker connections (experts, patients willing to share stories)
Funding support for approved events
Insurance coverage
Promotional assistance
Connection to local community members

Event Ideas You Could Host:

Local support group
Coffee chat meetup
Educational workshop
Awareness table at health fair
Walk for Alpha1 in your town
Physician education lunch-and-learn
Free testing event
Fundraiser for AATD research

Contact: events@markeglyfoundation.com to discuss your ideas!

Volunteer at Events

We Need Help With:

Event planning and coordination
Registration and check-in
Tech support for virtual events
Photography and videography
Social media coverage
Setup and breakdown
Greeting and hosting
Facilitating breakout groups
Sharing your story as a speaker

Benefits of Volunteering:

Deep connection with community
Inside access to experts and information
Skill development
Making a tangible difference
Meeting amazing people
Free event attendance

Individual Impact

Before Attending Events:

Felt alone and isolated
Confused about AATD
Uncertain about treatment options
Overwhelmed by managing health
Hopeless about the future

After Attending Events:

Connected to supportive community
Educated and empowered
Confident in treatment decisions
Equipped with practical strategies
Hopeful and energized

Community Impact

As Events Grow, We See:

More diagnoses as awareness spreads
Better informed physicians across specialties
Stronger advocacy leading to policy changes
Increased research funding and activity
Improved treatment access
Reduced stigma and isolation
Thriving, vibrant AATD community

Systemic Impact

Events Drive:

Medical education and training
Standard of care changes
Research breakthroughs
Policy reform
Public awareness
Cultural shift

One event can spark a chain reaction that saves thousands of lives.

The Future of Alpha1 Events

As We Grow from 10,000 to Millions Diagnosed:

📈 Events will multiply exponentially

From dozens to thousands of events annually
In every country, every state, every major city
Diverse formats meeting different needs
Culturally and linguistically tailored
Accessible to all regardless of location or resources

🌍 Global reach will expand

International Alpha1 summits
Country-specific conferences
Translation and cultural adaptation
Global awareness campaigns
Worldwide advocacy coordination

🎯 Specialization will increase

Events for specific genotypes
Disease stage-specific programming
Specialty-focused conferences (AATD & Alzheimer's, AATD & Cancer, etc.)
Occupation-specific support (athletes, musicians, healthcare workers, etc.)
Life stage-specific events (pregnancy, parenting, retirement, etc.)

💻 Technology will enhance connection

Virtual reality conference attendance
AI-powered personalized event recommendations
Real-time translation for global participation
Hybrid events seamlessly blending in-person and virtual
Event apps facilitating networking and engagement

🔬 Research integration will deepen

Events as recruitment sites for clinical trials
Data collection at events advancing research
Rapid dissemination of new findings
Patient-driven research agenda setting
Collaboration between researchers and patients

Your Participation Matters

Every person who attends an event:

✅ Gains knowledge that could save their life
✅ Makes connections that reduce isolation
✅ Contributes to community growth
✅ Helps normalize AATD awareness
✅ Inspires others to get tested, seek treatment, stay hopeful
✅ Creates ripples that extend far beyond themselves

You don't have to attend every event. Start with one. See what happens.

What Community Members Say

"Attending the Alpha1 Summit changed my life. I went from feeling alone and hopeless to feeling connected and empowered. I met my now-best friend there, found a doctor who actually understands AATD, and learned strategies that have dramatically improved my health." — Jennifer, ZZ, diagnosed 2023

"As a newly diagnosed patient, the AATD 101 Orientation was exactly what I needed. Clear information, supportive people, and practical next steps. I left feeling like I could handle this." — Marcus, MZ, diagnosed 2025

"The Uniting Doctors Symposium transformed my practice. I've now diagnosed 15 AATD patients who would have gone undetected. These events save lives." — Dr. Patel, Pulmonologist

"Our local Alpha1 meetup has become my lifeline. Just knowing I can grab coffee with people who 'get it' makes the hard days bearable." — Sarah, SZ, diagnosed 2020

"I attended a Walk for Alpha1 with my mom (who has AATD). I got tested at the event and found out I have it too. Early diagnosis is giving me opportunities my mom never had. That walk literally changed the course of my life." — David, age 28, ZZ

Next Steps

Check Out Our Event CalendarVisit: markeglyfoundation.com/events
Register for an Upcoming EventDon't wait—spaces fill quickly for popular events!
Join Our Events NewsletterGet monthly updates on upcoming events: markeglyfoundation.com/contact
Connect on Social MediaFollow @MarkEglyFoundation for event announcements, live coverage, and community highlights
Consider Hosting or VolunteeringEmail: events@markeglyfoundation.com

The Promise of Alpha1 Events

When we come together, everything is possible.

We transform:

Isolation → Connection
Confusion → Clarity
Fear → Hope
Suffering → Thriving
Individual voices → Powerful movement
10,000 diagnosed → Millions aware and empowered

Events are where community is built, knowledge is shared, lives are changed, and standards of care are transformed.

Events are where we go from surviving to thriving—together.

We have only just begun—and the best is yet to come.

Join us. Attend. Participate. Host. Volunteer. Sponsor. Share.

Together, we're building a future where no one faces Alpha-1 Antitrypsin Deficiency alone—and where millions benefit from the knowledge and community we're creating right now.

Alpha1 and You Events: Because together, we're stronger.

For complete event calendar, registration, and information:

🌐 Visit: markeglyfoundation.com/events✉️ Email: events@markeglyfoundation.com📞 Call: 1-800-ALPHA-EVENT💬 Connect: Join our community platform to see all upcoming events

See you at the next event. We can't wait to meet you.