When it was decided to do the first ACD Scientific Symposium and Family Conference in Austin, TX 2018, the idea that so many of us would be all together for the first time, brought on a lot of hopes for a successful conference. The idea that we would have the world’s leading experts in creatine deficiencies, communicating in the same room, and then to be surrounded by CCDS parents and their children that I feel like I’ve known for years, and yet had never met, was incredibly special. We were all excited. This was going to be an amazing opportunity. What could we do with this meeting to really capture it? After all, we thought that we may not have another opportunity like this for years. The answer was clear: A video!
The symposium was the perfect platform for the ACD to create an educational video that could be used for years to come. We knew having all of these experts, professionals, and parents in one place was the perfect opportunity to create something that could be used in many different ways within the medical community. We could really capture, through our children, how to recognize and diagnose CCDS, and this would also help us advocate for newborn screening and treatments. This was a massive undertaking. We started looking for someone to take the footage, edit it, and help us determine the goals of the video. We had to consider- where would we use it, who would be in it, and what would our messaging look like?
From start to finish the project took over 6 months. We worked closely with our videographer, who had the task of taking over 15 hours of incredible footage, and turning it into a 5-minute video that would accomplish all of our lofty goals. There are so many to thank for their work on this project- from the physicians and researchers who were a part of the video, the kids, their siblings, the parents that poured their hearts out, and Lumos Pharma for being a sponsor- we could not have done this video without you!
We are proud of this video and hope everyone takes the opportunity to watch it. Please share it with your teachers, your colleagues, your families, your therapists, and your doctors… and ask them to share it, too. This is how we can raise awareness of CCDS, during both CCDS Day (February 1) and Rare Disease Month (February)!
*Thanks to Kim Tuminello, ACD’s Director of Advocacy, for writing this post.