The Marfan Blog

Power Couple Surges Through Connective Tissue Condition to Help Others

Beauty Enthusiast Overcomes Obstacles

Nick’s Journey in Honor of Connor’s Big Heart

Losing My Sight Saved My Life

The Case of the Tell-Tale Toes

Working from Home and Your Mental Health: The Positives

Volunteer Drives Successful First-Year Proclamation Project

A Journey of Acceptance

Marfan Moms: The Ultimate Support Group

Broken Bones, But Not Broken

How It's Going

A Costco Shopper Saved my Life

Stronger Together

Healthy Life Comes From Awareness

Suffering in Silence No More


Top Five Things I Wish I Knew Before My Aortic Surgery

Your Questions Answered:  Medical Geneticist and Genetic Testing

Mental and Physical Recovery from Surgery

Taking Control

Three Things I’ve Learned In 25 Years Since Diagnosis

A Look Back: How Far We’ve Come in Aortic Surgery for Marfan Syndrome

Top 10 Benefits of Remote Jobs for those with a Chronic Condition

Trendsetting Volunteers Encourage Others to #DanceForVictory

Fierce Compassion: Becca Weust and the Stories She Tells

Pain and Perseverance

Reflecting on Awareness

Jimmy's Magic Turtle


Working with Your School Nurse

Invaluable Little Moments

Finding Commonality at the Marfan Annual Conference

Awareness Feels Good


Adolescent, Angry & Aware: Learning to make sense of ourselves and our bodies

Advocacy in Action: My Experience Lobbying for The Marfan Foundation on Capitol Hill

The Easiest Resolution: Taking Control of Your Health Journey in 2019

Empowerment Means Saying Goodbye to the Sidelines

Peace Through Connection

Lifesaving Education

We Found Our Family

Globetrotting When It’s Hard to Trot

Jim Cavan: The Journey to Backpack Health

A Workplace Issue You Probably Didn’t Anticipate

Living with the Typical Marfan Body Type

A Make-Over Because of the Marfan Annual Conference

The Marfan Foundation and Backpack Health: Frequently Asked Questions


Gone But Never  Forgotten: A New Way to Think About  Grief

CRISPR and Marfan Syndrome

My Marfan Story: Kacey Lamphier

Marfan Diagnosis: A Game Changer

5 Tips for Educating your Doctor about Marfan Syndrome

Marfan Awareness: Paula’s Story

Cardiac Conditions Associated with Marfan Syndrome: Early Detection is Key

In 2018, Resolve to Practice Self-Care

My Marfan Story: Home for Christmas

Tips To Help You Make the Most Out Of Your Doctor Visits

To Know or Not to Know: Genetic Testing and Marfan Syndrome

Newly Diagnosed? Veterans in the Marfan Community Offer Advice

The Journey of  [Control] Acceptance

Physical Therapy: Myths and Facts

Sydney Lerman Pediatric Hospitality Program: Join Sydney and Carly in Giving Back

My Marfan Story: Keith Avitabile

Beautiful Gift

Why I'm Grateful for Marfan Syndrome

“If This is the Future of the Foundation, Then Victory is Around the Corner!” Teen Council members are leaders and role models

Pregnancy and Marfan Syndrome: An Update from Melissa L. Russo, MD

Q & A with Jan Lynch, MSN, RN: Director of Help & Resource Center

Meet Your Gene:  An Introduction to the Marfan Gene and Current Research

When it Feels Like Marfan is Winning

My Marfan Story: Selma Kerzman

Sinclaire’s Story from the Heart

What Fulfills You?

Linh Ngo: My Marfan Story

Improving Your Quality of Life: An Introduction to Reflexology

When People Don't Get It

Nutrition, Weight, and Quality of Life - Part 3 of 3

Nutrition, Weight, and Quality of Life - Part 2 of 3

Nutrition, Weight, and Quality of Life - Part 1 of 3

College with Loeys-Dietz syndrome

Jamie Efurd - My Marfan Story

Living Well With Marfan Syndrome

Quality of Life: The Three Big Questions

7 Simple Fundraising Tips You Can Use Today

Carolyn Fisher - My Marfan Story

Steve Henry - My Marfan Story

From the Journal of Owen Gray: 2015 Annual Family Conference

Expressing Gratitude

Krystal Camire - My Marfan Story

Victory Is... Twenty-Five Bonus Years

Peter Donato - My Conference Story

Q & A with Isaiah Austin

Meet a Marfan Researcher - Silvia Smaldone, PhD

Adopt-A-School Victory Challenge Mini iPad Winner

Jennifer Lynch - My Marfan Story

Julie Kurnitz’s Marfan Story Gives Hope to Others

Victoria Falcone - My Marfan Story

Cindy Amdur - My Marfan Story

Suely Johns - My Marfan Story

Ben Carpenter - My Marfan Story


Nicole Kramer - My Marfan Story

Embracing A Road Not Chosen Through Painting

Aortic Dissection, My Family, and the Annual Marfan Conference

Weight Gain and Marfan Syndrome - Why Can't I Put On Weight?

My Daughter's First Marfan Conference - A Decade After Diagnosis

Flaunting Every Single Bit of My DNA - Living with Marfan Syndrome

5 Things You Can Do for Marfan Awareness Month

The First 6 Things You Should Do When Diagnosed with Marfan Syndrome

What the Marfan Community Means to Us

At This Moment of Opportunity, I'm Thankful for You.

Four Questions to Ask Your Family Over the Holidays

Health Insurance Marketplace: New Options for Accessible, Affordable Healthcare

School's in Session: What Better Time to Adopt a School!

Aging with Marfan Syndrome: 5 Common Questions

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Running for Those Who Can't