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Three Keys to a Positive Outcome
Looking back on her life growing up with Marfan syndrome, Taylor Storm can identify three keys...
Blog Category: Advocacy
Volunteer Drives Successful First-Year Proclamation Project
Amy Kipnis, the volunteer leader of our Legislative Action Team, has been a long-time volunteer at...
A Journey of Acceptance
The broad goal of Marfan awareness is about seeing the complete person behind the diagnosis. My...
A Costco Shopper Saved my Life
“If she’s your Mom, you need to get tested,” a woman said to me. She had noticed me – a...
Healthy Life Comes From Awareness
I was diagnosed with Marfan syndrome around the age of 12 years old, while growing up in Meridian,...
Advocacy in Action: My Experience Lobbying for The Marfan Foundation on Capitol Hill
In June 2017, a midterm election had just occurred with the issue of pre-existing conditions and...
Ben Carpenter – My Marfan Story
Before I share my story, I want to clarify that the title of my book, “The Bigs,” has nothing...
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