When Max was diagnosed with PBD, my husband and I were devastated to learn that treatments were limited and that it was ultimately terminal. We were somewhat surprised that diseases with no treatments even still existed. It was obvious that we needed to raise money to support research for PBD, but it wasn’t until we attend the 2015 GFPD conference that I really understood what kind of difference increased funding could really make for our children. At the conference, researcher Dr. Nancy Braverman explained that it would take approximately $1 million to advance any treatments currently in production. I left the conference with the intent of helping the GFPD raise that $1 million and knowing the story I needed to tell.
The idea for the video was based on the GFPD conference videos put together by Taylor Butalla. To create the video, I approached a coworker who does videography with a general idea of what I wanted to create. I wanted the video to feature videos of Max, outline the mission of the GFPD and to make people cry. He assured me that iMovie would be the perfect tool for what I had in mind, so I immediately had my husband start to learn the tool (I see myself more as a creative director). Overall, it was a fairly straight forward process and took approximately 2 weeks of arranging and editing after the kids had gone to bed.
The response to the video has been enormous. The numerous shares on Facebook have helped spread the understanding of PBD and the goals of the GFPD as well as led to over $20,000 in donations. Our PBD kids have a heartbreaking and inspiring story that rivals any television drama and I firmly believe the more we share it, the more funding and support we will receive.