National Spasmodic Dysphonia Association

This collaboration is between dystonia patient organizations, including the NSDA, and the research leaders of the Dystonia Coalition to develop and offer this self-reporting patient registry to the dystonia community. "The registry is a fantastic new opportunity for the dystonia community worldwide. It will be extremely valuable for fostering better communication between people who are affected by dystonia and researchers who are trying to learn more about dystonia," said Dr. H. Jinnah, the principal investigator for the Dystonia Coalition.

Although the focal dystonias, including spasmodic dysphonia, have many different manifestations, most experts believe they share a common pathogenesis or mechanism that causes the disorder. The common causes may be a similar gene defect, similar lifetime experiences, or both. Collecting information from different patient populations may help us identify the common features that they may share. This Registry complements the current scope of research for the Dystonia Coalition, a National Institutes of Health supported clinical research effort.

We anticipate that it will take 10 to 15 minutes to complete the survey. However, you may log out at any time and your answers will be saved. Please know your responses will remain confidential. Your participation is completely voluntary. We hope you will register today!

http://www.globaldystoniaregistry.org/

We are pleased to join with the Benign Essential Blepharospasm Foundation, DySTonia, Inc., the Dystonia Medical Research Foundation, and the National Torticollis Association as a member of the DAN – working every day to ensure that the legislative needs of the dystonia community are met and in this case, that dystonia researchers have the opportunity to compete for critical federal research support.

Can we imagine a day when we have our true and natural voice back? Really, if you take a moment to stop and think, can you imagine the blessing it would be? I can. Do we ever watch television, listen to a song, or have a conversation with someone and get so lost in the beauty of their voices or, simply, the ease with which they speak that we find ourselves almost in awe of their voice, barely aware of what they are saying?

Today may not be your birthday but the gift of regaining one's voice would be one no SD patient would ever forget. To help make this "birthday gift" even better, the NSDA Board has pledged to match the first $60,000 in donations to the NSDA! We are currently at $36,000 - over half way there!

Let's continue the research we have started; the research aimed at better understanding what is going on in the brain of those with SD, and finding better treatments for this disorder. Let us have the funds necessary for new proposals from scientists interested in conducting SD research and collaborating in the dystonia community. All of these steps are necessary to continue our understanding of the disorder, an understanding that will be critical to guide future research, to develop better treatments, and to find a cure(s).

If you are a person with SD, who better to be generous with than yourself? If you are a family member, a friend, a colleague, a donor, a doctor, a professional or anyone else interested in our wonderful community, please help us give SD folks one of the best gifts they could ever ask for.

Donate today! And also check and see if your company will match your gift to make your gift go even further.

Help us support the NDSA vision to ensure the ongoing viability of the organization that will continue to lead the effort to eradicate spasmodic dysphonia. This is a gift to all of us.

Finding the causes of a complex neurological disorder such as spasmodic dysphonia is an enormous task and one that a number of researchers and clinicians have dedicated their lives to pursuing. To understand the etiology of spasmodic dysphonia, we must rely, to a large extent, on the analysis of donated brains. Through the study of these brains, important clues about spasmodic dysphonia can be discovered. When scientists examine samples from donated brains and compare different age groups, genders and so forth, they can begin to gain a better understanding and knowledge of this complicated disorder, which will lead to development of novel therapeutics and treatments. This, in turn, will offer hope for SD-affected individuals and their families.

How will the tissue be used?
Our Scientific Advisory Board Chairperson, Dr. Christy Ludlow, represents the NSDA on the research committee which reviews applications from researchers requesting brain tissue. Since the majority of the scientific research studies can be carried out on a very small amount of tissue, each donated brain provides tissue that can be used by many different researchers at institutions throughout the U.S. and worldwide. When you enroll as a brain donor, you are giving a very precious gift which will benefit future generations.

How Do I Get Involved?
To enroll in the Dystonia Brain Donation Collective, click here to open up the registration form. Please print it out and either mail or fax it back to the NSDA.

We know that these decisions are not easily made and talking to your family is critical. But we also are confident that further advances can be made in understanding spasmodic dysphonia through this type of research. So we thank you for your consideration of this most generous gift.