In 2013 my amazing daughter, Grace, was born. She was perfect in every way. She had beautiful blue eyes, blonde hair, and a smile that would light up any room. It was at 6 months that we realized this joyful little love wasn’t progressing as she should. An extremely frustrating 12 months later, we finally received her diagnosis…Angelman syndrome.
Like so many of you, my wife and I went through the full range of emotions after hearing the words “Angelman syndrome.” It wasn’t until we were introduced to FAST, and Paula Evans, that we had the remarkable, never to be replaced, feeling of HOPE in this heart-wrenching diagnosis. We immediately knew this was the community that would help us fight for a cure for Grace!
I was honored to join the talented FAST Board of Directors in 2015, knowing this would be the most important work of my life. I have been humbled to serve alongside the most unbelievably hard-working individuals, my fellow board members. A team filled with strength, who advocate tirelessly, in order to follow a single mission….to bring meaningful therapeutics to individuals living with Angelman syndrome until there is a cure for this impactful disorder. I am grateful to each and every board member that has ever served FAST. Since 2008, board members have invested their time, resources, expertise and they have driven the vision forward. This team is powerful, and together we have laid the groundwork for the most robust scientific landscape that has been seen in any other neurogenetic disorder to date. I am beyond honored to serve as the interim chairperson of FAST. I know this will be an incredibly difficult chair to sit in, as Paula Evans has considerable shoes to fill. I commit to every one of you that I will do my absolute best to ensure that the FAST mission remains on track and the most robust scientific and translational research agenda is pushed forward FASTer than ever.
If you attended the most recent FAST Summit and Gala, you may recognize my company, Keder Solutions. As the owner and founder of this organization, I believe strongly in FAST’s mission, and I’m excited to be a small part of our progress. We all know the transformative power of the FAST Summit and Gala, and I have attended every year since I learned about it in 2015. Over the years, I have enlisted many of my colleagues and friends to join me and my wife, Bethany, to experience what this incredible community is all about.
I have had the greatest pleasure of meeting and talking with so many of you in this fantastic community over the last five years, since Grace’s diagnosis. I thank you all for sharing so many joys, experiences, successes, challenges, and most of all hope with me and my family. This has meant more to me and Bethany than you will ever know. I am beyond humbled, and honored, to have the opportunity to lead FAST’s mission and empower our talented board of directors while continuing this fight to improve the lives of all individuals living with Angelman syndrome.
From the FAST Board
We’re proud to have John as our interim chairperson. This is a vital role within the organization, and we’d like to take this opportunity to reflect on what this position should entail going forward to best serve the needs of FAST and our entire community. John has been a champion of Angelman syndrome research and the AS community for many years, and we’re confident that he will do great things in the meantime while pushing FAST’s research agenda forward.If you have the pleasure of speaking with John, you’ll quickly discover he loves telling people about his daughter and the hope FAST brings to nearly half a million families worldwide through life-changing research for individuals with Angelman syndrome. Every email he writes ends with a statement bringing awareness to Grace and Angelman syndrome, and while he humbly states that he is doing “a small part” to drive awareness and fundraising for AS, we argue that each of these acts are enormously substantial. Thank you for continuing to fight alongside us!