I essentially grew up with the Dystonia Medical Research Foundation (DMRF) and it is my great pleasure to now serve as President of the Board of Directors. My predecessor Claire Centrella led the DMRF through many important and exciting years, and her leadership was critical to our success. I join the dystonia community in thanking her for her committed and steadfast service.
A little about me: my parents, Dennis and Barbara Kessler, have been involved with the DMRF since the very beginning. Their commitment was fueled by the desire to make a significant difference in the quality of my life, for I had been diagnosed with early onset dystonia at the age of 12. This diagnosis came after years of unexplained symptoms, countless doctor visits, and many a sleepless night.
As a child, I was struck by their drive to make things better, not just for me, but for all families devastated by this disorder. They taught me to work hard for a cause bigger than myself and that is exactly what I plan to do. They didn't give up and they instilled in me that same unyielding desire to find the answers.
I support the work of the DMRF because it is making a difference. As an adult, I learned that I was positive for the DYT1 gene mutation, a gene found through funding by the DMRF. My two sons were conceived through a form of in vitro fertilization that ensured they would not inherit the mutated gene. They are dystonia free and, at 6 and 2 years old, are busy and energetic. Their childhood will be very different from mine, and that means the world to me.
In 2007, when it became too painful to walk to the park with my son, I decided to undergo deep brain stimulation surgery, the results have been life changing. My wife and sons now have a husband and father who, despite having dystonia, is physically able to be active and fully engaged. None of this would have been possible without the DMRF.
I know dystonia. I know the DMRF. Over the years, I have come to know many of you and I am optimistic about our future and our plans to wipe out dystonia. I look forward to working hard on your behalf and with your partnership. Thank you for your support.
Sincerely,
Art Kessler
President
Posts
Art,
ReplyDeleteCan you please tell me why it is that the DMRF censors what people post on your forum? Why is it that you deny access to information unless it also benefits the DMRF? In the past week I have posted 3 times about support group meetings and they have all been deleted. I then asked today (a post that was also deleted) why it is that you deleted my previous posts after claiming (and I quote from a DMRF email), "We encourage everyone to reach out to others and raise awareness about dystonia"?
I have "reached out" 4 times in the past week and you have deleted all of my messages. Who does the DMRF really care about? All of us with Dystonia or just those who can be of benefit to the DMRF?
Regarding your parents, you said, "I was struck by their drive to make things better, not just for me, but for all families devastated by this disorder. They taught me to work hard for a cause bigger than myself and that is exactly what I plan to do." If this is true Art, why do you only allow things to be posted on your forum if it also benefits the DMRF? How do you then justify posting DMRF activities on other people's personal and group pages, but they can't on yours? Why the hypocrisy? Why deny ANYONE with Dystonia from valuable information?
The DMRF has been questioned many times on various forums about many things, and no one has ever answered. I will ask again. How do you rationalize having DMRF staff taking in 6 figure salaries and acting in such hypocritical ways? Why do you say you care about all who have Dystonia, yet deny those very people access to information that might be of benefit to them?
I am appalled at the behavior of the DMRF. Even more appalling is that you do not answer to your critics, which are the very same people who suffer with the dreaded disease in which you also suffer. Care to become a part of the group and answer to your fellow Dystonians Art, or do you prefer to be one of the others who only cares about money?
Tom