Member Blogs/Books/Stories

Reading the stories of others whose lives are affected by cavernous malformation provides comfort and offers the kind of information that can only come from experience.

Patient Stories

Read stories shared by Alliance to Cure Cavernous Malformation members about how they have coped with cavernous malformations.


A number of members have blogged about their experiences with cavernous malformation. If you’d like to add your blog to our list, please send the name and link to Alliance to Cure Cavernous Malformation is not responsible for the content of these blogs.


  • Eloquent is our first-ever documentary about patients and families dealing with the ups and downs of a cavernous malformation diagnosis.
  • Maggie Whittum – The Great Now What


Members have written books about their experiences as patients or caregivers (Caveat: these heroic stories are those of individuals who have had the most difficult cavernous malformation journeys. They are not to be construed as representing the typical experience.)

Interested in submitting your story?

Our stories are powerful. They help to convey the challenges and triumphs of living with cavernous malformation to those who have the power to help and offer comfort and connection to those in similar situations. We frequently include member stories in our newsletters and in social media postings. We also have a need for members who can speak to the media – having your story ahead of time would help us to make the best matches.

We would be happy to help you write your story. The easiest option is to complete the form linked here. We will take the information shared, write it up, and get your approval before moving forward.

You can also email your story to along with a high-resolution picture, preferably of you doing something you love.

Updated 2.22.24