Over the past couple of days, I have had the honor to participate in the IFOPA Drug Development Forum. Over 170 researchers, clinicians, pharma representatives and families came together in a unique way to discuss FOP. The number was up by 100 people since the last forum two years ago; mind-numbingly, this is approximately 20% of the known patient population.
There were five blocks of 12-minute talks by researchers followed by group discussion. Every day ended with a patient panel for FOP’ers to tell their stories to the group.
I tried not to be too emotional, but those of you who know me well know that even the board meetings get to me. The fact that 12 people will travel annually and meet six times per year to help forward advocacy and research for FOP is overwhelming. You can imagine I found myself in awe at this event.
Two days packed full of meetings with all of the rock stars of the FOP research and development world. It was truly an amazing experience.
I’m a car girl by trade, so I have to tell you that a lot of the in-depth discussion went over my head. However, I am proud to say that I did understand about 70% of it. The discussions were both captivating and emotional.
To the FOP families out there, the message is so hopeful. There are more things on the horizon and many people fighting to get you or your babies a treatment as soon as they can.
I’ve always said if we had to have something crazy, this is the crazy to have. The whole community, from the clinicians to the researchers and the pharmaceutical companies to the lab, and most importantly, the patients and the families, have my heart.
One day I will get to write to you all that an effective treatment for FOP has been found. Maybe not tomorrow or next year, but I’m confident that it will be found.