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An Ode to the Spoon Theory and Online Communities
Chronically ill and disabled individuals utilize the internet to find community and spread...
Blog Category: Advocacy
Activating Your Activism
Emily Ladau, author and activist, is a part of the rare disease community. She lives with Larsen...
Awareness is Never Losing Someone Unexpectedly to Marfan Syndrome
Helping Others Helps Me I share because I care. It sounds simple, but it is so true. There are...
An Eagle Scout’s Generosity in Memory of a Friend
Jonathan Brink, an 18-year-old who attends Branham High School in California and is a Boy Scout in...
Three Keys to a Positive Outcome
Looking back on her life growing up with Marfan syndrome, Taylor Storm can identify three keys...
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...
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