The Craniosynostosis Documentary

As a child, I had a sagittal Craniosynostosis birth defect.  My parents were brave enough to give me the corrective surgery that involved removing a section of bone from my skull at 13 months of age.  That was 1972.  All my life I wondered if other people went through this, shared my scar and felt the same way I did.

In 2017, I finally did a search for books about Craniosynostosis.  I found one.  Beyond The Grip... by Kase Johnstun.  Reading that book changed my life.  Before that, I had only read of stories of parents struggling with the decision whether or not to do the surgery for their child.  Now, I knew someone else felt like I did.  I had to reach out to him and we met through twitter.  We also had a mutual mission - reassure the parents that doing the surgery is the right decision.

There are great support groups for these parents but no simple way to gather information or understand what they are going through.  Kase and I knew we could help and that is what this documentary is all about.  In his book, he met with doctors, experts and families which is what we intend to do with this documentary.  The documentary is meant to provide insight to what Craniosynostosis is, what the options are for correction and support for the families going through the process.  Once completed, we will seek a distribution platform that can reach the maximum audience and produce the most impact.

Kase and I are attempting to produce this documentary independently which means self funding.  The major costs will be video crews and travel.  This is what we're attempting to raise money for - camera operators, sound engineers and the travel expenses to visit experts, doctors, hospitals and families.

 This is meant to be a collaborative effort with the Cranio community so even if you cannot help fund the documentary - perhaps you can share your story.

Kase and I created a short film about our first meeting that is currently on the film festival circuit in an attempt to raise awareness and funding.Our premiere is at the 2019 Fort Worth Indie Film Showcase taking place at the Hilton Garden Inn - Medical Center in Fort Worth, TX during the 11:40am block on Saturday July 27 in theater B.  If you are in the area, I encourage you to screen with us.

Thank you for your support and I will continue to update with information as we move along.

Donations (0)

  • Summer Ehmann 
    • $200 
    • 2 mos
  • Brittany Blanchard  
    • $50 
    • 2 mos
  • Donna Hernandez 
    • $100 
    • 2 mos
  • Helen Noorthoek 
    • $100 
    • 3 mos
  • Molly Bretthauer 
    • $25 
    • 3 mos

Fundraising team (3) 

Trevor Baierl 
Raised $200 from 2 donations
Playa Del Rey, CA
Kase Johnstun 
Team member
Raised $425 from 6 donations
John Salcido 
Team member
This team raised $125 from 3 other donations.
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