Finding Purpose After Loss: Parents’ Mission to Save Others
Kaitlyn was a vibrant, seemingly healthy 14-year-old girl who enjoyed musical theater and...
Blog Category: Advocacy
Connected and Not Alone
I was so excited to attend the Michigan Regional Symposium in early May! We moved to Michigan in...
A Trip to Conference Leads to a Marfan Diagnosis for 30+ Family Members
Last year, Reginald “Reg” Bronson and his family gathered for the funeral of his brother who...
Passion and Outreach Lead to Marfan Awareness
A Marfan Awareness Month Blog Photo: In January, Christopher was presented with a...
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...
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