Running with Purpose: Jenny Braverman
Running this marathon on behalf of my family and others affected by Marfan Syndrome and related...
Blog Category: Community
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...
We See Your Impact
Awareness. In the Marfan world, this is one word with infinite meanings and feelings attached....
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