Participants at the FD Research Conference

"It was truly inspiring to see 40 experts come together to share ideas on FD research. The presentations were fascinating, but the discussions among the experts about the projects were, in many ways, even more interesting. For two days, all of these talented individuals came together and really focused on FD. It was great to see them interacting and planning new collaborations," says David Brenner, executive director of the Dysautonomia Foundation. "People in the FD community are used to thinking that we're an isolated, orphan disease that very few researchers care about, but at this conference, you could see that the numbers of engaged researchers are growing and many new research projects are being planned."
 
The goal of the conference was to inspire discussion and exchange of ideas about FD research that will ultimately lead to improved treatment and better quality of life for people with FD. Many of the participants had never met  before, and they commented that they were grateful for the opportunity to establish new connections, spend time together and enter into prolonged conversations. Several researchers indicated that they would be submitting new research proposals to the Dysautonomia Foundation. 

"The conference was a success in many ways," says Brenner. "It informed the Foundation about the details of many projects that are already underway, it gave researchers a chance to bounce ideas off of experts who are focused on similar projects, it allowed the Foundation's advisory board members to become familiar with, and help refine, new prospects for funding, and it gave all the visitors a chance to meet people with FD."  

"In one session, we had four individuals with FD address the experts. That really drove home the point that FD is not some abstract research problem. For many of the attendees, it was the first time they had ever met anyone with FD. It allowed them to see FD as a human condition. You could tell they were inspired to help people with FD." 

Participants in the conference come from as far away as Australia, Chile, Israel and Europe. It was the largest and most diverse gathering of researchers and experts specifically focused on FD. The Dysautonomia Foundation sponsors an FD conference ever two or three years. The next one is planned for fall, 2012.
 
Many of the researchers who attended are current or past recipients of grants from the Dysautonomia Foundation, but some had never been involved with the Dysautonomia Foundation before this conference. Several of the attendees have received funding from the NIH and other mainstream organizations, but, as Brenner points out, "The main focal point for FD research has always been the Dysautonomia Foundation, and we want to inspire as many researchers as possible to get involved in this area of study."