The Mark Egly Foundation was born from firsthand experience.
Our founder, Mark Egly, knows exactly what it's like to have very little support and knowledge of Alpha-1 Antitrypsin Deficiency. How does he know? By living it for decades undiagnosed.
For 30 years, Mark struggled with symptoms no one could explain. He coughed constantly. He couldn't catch his breath. His weight dropped. His quality of life declined. And through it all, he faced it largely alone—without answers, without proper treatment, without a community of people who understood.
When diagnosis finally came at age 52, Mark made a commitment:
We aim to ensure that not another soul walks alone on this journey again.
That's why building a support team isn't just helpful—it's essential. And we're here to help you create one.
Your support team is the network of people—medical professionals, family, friends, peers, and resources—who help you navigate life with AATD successfully.
Think of your support team as your circle of care:
No one person can provide everything you need. But together, your support team creates a powerful foundation for thriving with AATD.
Medical Consequences:
Emotional Consequences:
Practical Consequences:
Quality of Life Impact:
Mark's experience showed him: trying to manage AATD alone isn't just hard—it's potentially dangerous.
Role: Coordinates your overall health care, manages routine issues, refers to specialists, ensures all providers communicate.
What to Look For:
How They Help:
Red Flags:
Role: Expert in AATD management, lung health monitoring, AAT augmentation therapy decisions.
What to Look For:
How They Help:
Finding One:
Role: Monitors and manages liver health, screens for complications.
When You Need One:
How They Help:
Role: Helps you understand inheritance, family implications, testing recommendations.
When to See One:
How They Help:
Based on Your Specific AATD Manifestations:
Rheumatologist - For autoimmune conditions (arthritis, lupus, etc.)
Neurologist - For neurological symptoms or family history of dementia
Gastroenterologist - For digestive issues, IBD, pancreatic concerns
Cardiologist - For cardiovascular manifestations
Dermatologist - For skin conditions related to AATD
Endocrinologist - For metabolic issues, diabetes
Oncologist - If cancer develops or for high-risk screening
Mental Health Professional - Psychologist or psychiatrist for coping support
Don't Hesitate to Get Specialists Involved Early
Traditional medical approach: Wait until organ damage is severe before seeing specialists.
Better approach: Preventive specialist involvement to avoid damage in the first place.
Spouse/Partner:
How to Help Them Help You:
Children (Age-Appropriate Involvement):
Parents:
Siblings:
Who to Include:
How They Can Help:
Setting Boundaries:
Only someone with AATD truly understands:
Building Your Peer Network:
1. Peer Mentor (Your AATD Guide)
2. Online Community Friends
3. Local Support Group
4. Conference/Event Connections
5. Your "Alpha Squad"
Why You Might Need One:
Finding the Right Therapist:
Types to Consider:
How They Can Help:
Professional Patient Advocates Can:
Finding One:
Special Considerations with Chronic Illness:
How They Support You:
Utilize Them For:
How They Support You:
Utilize Them For:
How They Support You:
Utilize Them For:
Organizations That Can Help:
Consider Adding:
Local Resources:
Create a document with:
Primary Care Physician
Specialists (List each)
Clinical Support (Nurses, therapists, etc.)
Family Support Team
Peer Support
Professional Services
Organizations
Keep This List:
Schedule Regular Touchpoints:
Weekly:
Monthly:
Quarterly:
Annually:
Before Appointments:
During Appointments:
After Appointments:
Communication Tips:
What Works:
What Doesn't Work:
Building Strong Peer Relationships:
Reality Check:
Action: Start small. Ask for one specific thing from one person.
Reframe:
Action: View your support team as your resources—you're the CEO directing resources, not giving up control.
Learn:
Action: Practice asking with a safe person first.
Solution:
Action: Reach out to Mark Egly Foundation for peer mentor request TODAY.
Start Simple:
Action: Pick ONE thing from this document to do this week. Just one.
Acknowledge:
Action: Consider starting with professional support or structured programs (like peer mentorship) where roles are clear.
Additional Team Members Needed:
Additional Resources:
Building Support at Work:
Portable Support:
Support Teams Need Maintenance:
Warning Signs Support Team Needs Attention:
Refreshing Your Team:
Initial Support Team:
How They Helped:
Result: Sarah went from overwhelmed to confident in 6 months, successfully started AAT therapy, and now mentors others.
Background: David, diagnosed 10 years, lung function declining, considering transplant.
Support Team Mobilized:
How They Helped:
Result: David received transplant, family stayed strong through crisis, and he's now thriving post-transplant.
Challenge: Single, no nearby family, newly diagnosed.
Support Team Created:
How It Works:
Result: Maria never feels alone, has robust support despite not having traditional family nearby.
Here's what we commit to you:
Contact us anytime:
We aim to ensure that not another soul walks alone on this journey again. That includes you.
Choose 1-3 to start:
Remember: You don't have to do everything at once. Building a support team is a process, not a single event.
Mark Egly walked the path of AATD largely alone for 30 years.
His suffering became his mission: ensuring you never have to.
Every resource, every program, every connection offered by the Mark Egly Foundation exists because Mark knows the cost of isolation—and the power of support.
Building a support team isn't a sign of weakness. It's a recognition that:
Your support team is waiting. Some members you haven't met yet. Some are already in your life but need invitation to help more. Some are organizations and programs ready to embrace you.
All that's required is your willingness to reach out.
Start today. Start small. Start somewhere.
But please, don't walk this journey alone.
Start Here:
Download:
Your journey with AATD can be one of thriving, not just surviving.
A strong support team makes all the difference.
Let's build yours together.
"No one should walk alone on this journey. We aim to ensure that another soul doesn't have to."
— Mark Egly, Founder
Welcome to your support team. We're honored to be part of it.