Todd Talarico, September 2, 2019
In August my company asked me to pull together a presentation on Advocacy. I work for a small Oncology start-up called Immunomedics and we’re all working hard to bring a new medication to patients with Metastatic Triple-Negative Breast Cancer. Our patient advocacy coordinator knew I was involved with a foundation and asked if I’d share my advocacy experience. I agreed.
At first I was a little skeptical and wasn’t sure where to start, but when I finally sat down and started building a presentation it all just flowed. I started by writing a little about APS Type 1 and how our daughter Gaby was diagnosed…the trials and tribulations of becoming a parent living and raising a child with a rare disorder. Then I put slides together about finding NORD, building our website, the start of the foundation, the NIH experience, and most importantly our experience finding all of you!
The presentation was very fulfilling and also a great experience to reflect on all we as a group have accomplished in just five years as a foundation. Since 2014 we’ve had some wonderful experiences. We filed our 7th Research Grant and completed our 3rd International Symposium in 2019. We’ve also watched the growth of the NIH APS Type 1 Natural History study grow well past 100 patients making it the largest study of APS Type 1 patients in the world! The studies that have been published by the research being conducted today will pave the way to proactive treatment that could one day prevent the manifestations of some conditions in the future.
Finally, and most importantly, I’ve had the opportunity to share laughter and tears with many of you. I’ve watched your children grow and develop and I’ve seen long term relationships spring up between the kids, families, and the foundation.
I’m proud of what we’ve accomplished and hopeful for my daughter’s future as well as the future of our ever expanding family. I look forward to sharing many memorable moments with you in the future.