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Ways to Help Advance Research |
DR. PHILIP STARR at UC San Francisco is recruiting for an ADAPTIVE DEEP BRAIN STIMULATION STUDY. For a study brochure click HERE To reach Julia Sun, the study coordinator, call 415-514-8285. To view Dr. Starr's presentation on 3/3/21 when he discussed the study, click HERE
BECOME A BRAIN DONOR Help us learn more about the inner workings of the dystonia brain by registering to become a brain donor. Researchers are interested in studying the brain tissue from both dystonia-affected individuals, as well as from those who are blood-relatives of someone with dystonia. They are especially interested in studying families where dystonia is present. The DMRF & the NSDA partner with the Harvard Brain Tissue Research Center (HBTRC) at McLean Hospital in Belmont, Massachusetts for this important research. Advance registration is recommended (but not mandatory) and it is crucial that anyone considering brain donation have a discussion with their family members, so that everyone is aware as the donor's Next-of-Kin or Legal Representative will be the person responsible for making the call to notify the Brain Bank when death has occurred. That person will also need to grant permission for the brain recovery to take place, as well as authorize the donor's medical records to be sent to the HBTRC. There is no cost involved and the brain recovery does not disrupt funeral or memorial services or alter the outward appearance of the donor. Brain recovery must be completed and the brain must arrive at the HBTRC within 24 hours of the donor's passing and the Brain Tissue Resource Center needs to be notified immediately, so that the recovery can take place quickly. If you would like more information about this vital program, please contact MARTHA MURPHY, Brain Bank Liaison at brainbank@dystonia-foundation.org and please provide your full LEGAL NAME, your postal address, phone number(s) and your e-mail address. We will be glad to mail you the short, one-page donor registration form and information about the program. You can also download a brochure by clicking HERE and fill out an online registration form by clicking HERE You can also read more about the program by clicking HERE In addition, you can register separately with the HBTRC. Click HERE for more information. You can also phone 1-800-BRAIN BANK (1-800-272-4622).
FOR SPASMODIC DYSPHONIA - Researchers at Massachusetts Eye & Ear at Harvard Medical School are conducting a study on Spasmodic Dysphonia, voice tremor and vocal fold nodules using a novel oral medication called XYREM. It is typically used to treat narcolepsy. It mimics the effects of alcohol in the brain which helps improve symptoms in some with SD. Travel to Boston and lodging are reimbursed plus study volunteers will receive a $200 debit card at the completion of the study. For more information, contact Lena O'Flynn, Research Assistant at dystonia.research@gmail.com or 617-563-6016. DYT1 Volunteers Needed for Study: Researchers at Columbia Medical Center in New York are recruiting individuals with DYT1 dystonia and asymptomatic carriers of the DYT1 mutation for a clinical study. The study involves performing short auditory and visual tasks on a laptop. The exercise takes an hour to complete, and eligible volunteers can participate from home or at Columbia Medical Center. Participants will be asked several questions regarding their medical history and current medications. The enrollment criteria for this study are: If you are interested in participating in this non-invasive study or require additional information, please contact Dr. David Arkadir at 212-305-3767 or da2501@columbia.edu ***
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Global Dystonia Registry Volunteers Needed for Global Dystonia Registry - The DMRF is pleased to announce the launch of the Global Dystonia Registry. This is the first-ever patient registry devoted to focal dystonias. It is designed to collect data submitted from persons affected with a focal dystonia(s) to assist in clinical research efforts including clinical and research trials. As a supporter of this registry, the DMRF encourages you to consider participating. Although the focal dystonias 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 compliments the current scope of research for the Dystonia Coalition, a National Institutes of Health supported clinical research effort. Your participation is important for this effort to be successful. To learn more or to register with the Global Dystonia Registry go to: http://www.globaldystoniaregistry.org/ DEEP BRAIN STIMULATION STUDY DR. MELISSA HOUSER at Scripps, La Jolla is conducting a Deep Brain Stimulation trial for Cervical Dystonia, OMD, Tourette's and focal dystonia. For more specific information, please call 858-554-8203. DYSTONIA GENETIC RESEARCH STUDY Volunteers are urgently needed! Finding the genes for dystonia may be the key to understanding what goes wrong and how we can better treat or cure it. A collaborative team from Beth Israel Medical Center and Mount Sinai School of Medicine is conducting a study aimed at finding these genes. If there are two or more living individuals in your family with any form of dystonia (torticollis/cervical dystonia, blepharospasm, spasmodic dysphonia, writer’s cramp, generalized) please contact Deborah Raymond for more information about this important study. Participants will be asked to complete a short questionnaire and medical record release form, sign study consents, and give a blood sample. You do NOT need to live in or near NY to participate! Your information will be kept strictly confidential. You can help to unlock the mysteries of dystonia! For more information please contact: Deborah Raymond, M.S. |
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