Let’s Just Get Checked Out
I'd actually heard about Marfan Syndrome before my dissection. It was mentioned on a TV program...
Blog Category: Community
Running with Purpose: Jenny Braverman
Running this marathon on behalf of my family and others affected by Marfan Syndrome and related...
In Memory of Chris Heaney
This week, we sadly bid farewell to a true pillar of our Marfan community, Christopher Heaney. In...
Connected and Not Alone
I was so excited to attend the Michigan Regional Symposium in early May! We moved to Michigan in...
A Teen’s Perspective: Finding a Community at Conference
As a teen with a connective tissue condition, building relationships with others who “get” you...
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...
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