About Margaret Tuchman
Since the fall of 1995, Margaret found her life becoming more deeply involved with and learning about the People With Parkinson’s (PWP) community and their struggle to claim victory over the disease that has halted their lives. She and her husband, Martin, along with a group of activists, dedicated four years of concentration to have Congress pass a bill to guarantee the annual expenditure of 100 million dollars for Parkinson’s disease research. The Morris K. Udall Parkinson’s Research and Education Act was signed into law in the fall of 1997 by President Clinton. To qualify for Parkinson’s research grant money from The National Institutes of Health (NIH) under the Udall Act, researchers must submit their scientific data with grant applications. The procedure is very costly, and often researchers do not have the funds required to compile the necessary data. This is when the seeds for a unique partnership were planted. In 1999 The Tuchman Foundation (fostering philanthropic activities and chartable support) and The Parkinson Alliance (to raise funds for the most promising Parkinson’s disease research programs), both non-profit corporations based in Princeton, New Jersey, were formed.
In December of 2000, Margaret had very successful bi-lateral DBS-STN surgery at NYU School of Medicine, The Center for the Study and Treatment of Movement Disorders. As a result of her surgery, she was feeling better than she had felt for the previous 10 years, and she decided to “give back” to the PD DBS community. She developed a list of questions, putting them into survey format. These questions were designed to give voice to and record the patients’ point of view of the entire DBS experience.
She created a DBS specific Patient Survey in 2001 to record the reactions and feelings of the patients’ to their experiences pre-, during, and post surgery. The NYU surgical team served as an advisor in formulating the survey questions and gave her access to their patients, who were the first group to complete the survey. Margaret is sharing these experiences with peers and providing this information to the DBS community at DBS4PD.org. Research has been expanded to (1) obtain a better understanding about the experience and well-being of individuals with PD who have received DBS; and (2) and compare individuals with and without DBS in the context of both motor and non-motor symptoms related to PD.
She invites anyone with Parkinson’s, regardless if you had DBS surgery or not, to visit DBS4PD.org to participate in our current survey and read the results of our past surveys. All survey reports are provided free of charge.
One of many facets of Margaret’s vision when she created The Parkinson Alliance and DBS4PD.org was to bridge the voice of the patient’s experience to the treatment providers in order to enhance the treatment effects for PD and improve quality of life for the individuals with PD. This blog provides Margaret with an additional outlet to reach the Parkinson’s community. She welcomes your comments.