President’s Message

As the new President of the Board of Directors of the Dysautonomia Foundation, I would like to extend my best wishes to you all, and to invite you to work with us in our efforts to treat, educate and cure. We have witnessed a year of great change with the identification of the FD gene and we are assessing the new challenges ahead. I would like to describe the major areas that the Board will be addressing, and the dreams I have for the future.

We have come to a crossroads in the area of research with the discovery of the FD gene. As we enter the next phase of scientific investigation, we will appoint new members from various areas of the scientific world to reflect our new directions. We are prepared to grant up to a million dollars for research into the function of the IKAP gene and other relevant scientific research, and hope to have grants awarded by year’s end. It is truly an exciting time to witness the exponential progress made in the field of genetics and medicine and we are hopeful that our loved ones will benefit directly, swiftly and significantly from this knowledge. Vice President Laurent Landau is heading our Scientific Subcommittee, along with Vice President Jeffrey Goldberger, and Directors Adam Sachs and Faye Ginsburg.

The Foundation has as its mission the funding of the FD Treatment and Evaluation Centers located at NYU Medical Center in New York and Hadassah Hospital in Israel; supporting the Foundation office in Manhattan which is our “operation central;” and awarding grants for major scientific research. Our budget has continued to increase over the years and we must meet these increasing fiscal demands. This reality places a greater burden on the Board to continue to raise substantial amounts to support these ventures. Vice President Lisa Joseph will be overseeing the Fund Raising Committee and helping to give direction to the Board’s efforts. We must acknowledge the hard work of past and current Directors, whose contributions have been critical to the life of the Foundation. And finally, the Chapters across the world have continued to support the Foundation and for this we are very grateful.

Vice President David Brenner is heading up our Internet Committee, sharing his professional expertise in technology and the Web, thereby enhancing the Foundation’s ability to communicate with parents, professionals and friends.

We face quite a challenge in disseminating information about a carrier test to the general population as well as medical professionals. Our initial campaign will be to bring our message to synagogues throughout the US, coinciding with the Jewish Holidays this fall. Vice President Steve Kietz and Director Barbra Berg are guiding the Public Relations Committee. I personally am working on a steering committee (in my home city of Philadelphia) which is brainstorming ways in which the message about all Jewish genetic diseases can most effectively be brought to the Jewish population. Hopefully we can develop a model which will be successful in other venues.

Directors Beverly Fettman and Cari Pepkin are working tirelessly on issues related to legislation and benefits for those with the diagnosis of FD.

My personal dream is for a future in which all parents can be supportive of each other, and each other’s efforts. We need to be grateful for the many different roads that parents travel, for the work, the outreach, each individual and collective effort that helps one child. At the end of the day, the efforts expended may help all of our children, and grandchildren. Each in his/her own way, every bit of involvement will make a difference. With your help and support we can achieve new heights and begin to dream of a better future. We invite all of you to share your talents with us so we can continue our good and necessary work.

Jennifer Sonenshein