FD Information
October 2011
Dysautonomia Foundation, Inc.
The Dysautonomia Foundation is a registered 501(c)3 non-profit organization.
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 The 2011 International
Familial Dysautonomia Research Conference
Basic, Translational and Clinical Research

FD Gene
Researchers and experts from around the world came together in New York City
to exchange ideas, establish collaborations and propose new directions
for FD research and treatment.

The 2011 International FD Research Conference brought together researchers and experts from a variety of disciplines to review, discuss and propose directions for FD-related research and treatment. There were 20 presentations spanning topics including the latest findings on autonomic clinical investigations, progress reports on clinical trials of new therapies, development of biomarkers that could be used to measure progress in clinical trials, progress on FD animal models, identification of new therapeutic compounds and updates on research on the IKBKAP gene and ELP1 protein.
Each of the presentations was followed by a question and answer session and a group discussion. The conversations about the research projects went on continuously throughout the group lunches and dinners sponsored by the Dysautonomia Foundation.  (Click here for the conference program, including a list of attendees and a list of all presentations.)

Participants at the FD Research Conference
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."


The Dysautonomia Foundation

The Dysautonomia Foundation is a nonprofit organization supporting the best possible medical care
and scientific research for the benefit of people afflicted with FD. The Foundation also conducts social service
and public awareness programs for the benefit of the FD community and for those in the general population
who may be at risk for FD.