Passion and Outreach Lead to Marfan Awareness
A Marfan Awareness Month Blog Photo: In January, Christopher was presented with a...
Blog Category: Advocacy
An Ode to the Spoon Theory and Online Communities
Chronically ill and disabled individuals utilize the internet to find community and spread...
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...
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