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TremorAction.org Newsletter: April | June Issue
Read inspiring articles for a better understanding of living with essential tremor, cervical dystonia, and tremor related neurological movement disorders.
Esther Baldinger, MD summarizes the results of her Essential Tremor Survey. Cleveland Medical Devices defines Tremor as more than meets the eye. Diana Herring, MN, ARNP of Northwest Hospital and Medical Center shares DBS can help dystonia. Solstice Neurosciences launches an online study resource for Botulinum Toxin Type B. Jerome Lisk, MD introduces the Huntington Movement Disorders Program located in Pasadena, CA. Alseres Pharmaceuticals initiates Phase 3 of the POET Program. Bob Meyer, MS presents the Mission of the Trace Center and the current Center Project, the Touch Screen Study. Allsup provides 10 tips for breaking through the SSDI backlog. Tim Moore, SSDI Advocate discusses medical record documentation for SSDI. Romert experiences Chicago at the AAN Meeting.
New Board Member
Tremor Action Network is pleased to announce the appointment of Eli Horn to TAN's Board of Directors. Eli is presently the executive director of the Visitacion Valley Community Beacon Center in San Francisco.
Eli's passion for the community, youth services, education, and crime prevention/intervention extends beyond his 10-year tenure at the Beacon Center, and includes volunteer positions. Inspired by his campaign manager's dual diagnosis of cervical dystonia and essential tremor, Eli serves on the Tremor Action Network Board to shine the spotlight on millions of people in the United States diagnosed with essential tremor and tremor related neurological movement disorders.
CleveMed Computer Mouse Study
Joseph P. Giuffrida, PhD is recruiting 10-15 volunteers with essential tremor in or near the Cleveland area to participate in a clinical study with CleveMed's computer mouse that is designed to filter out tremor. The two criteria for participation are: the volunteer should have a moderate to severe tremor, and be proficient in using a computer mouse. For additional study information please contact Dr. Giuffrida at
216-619-5904 or send an email to: JGiuffrida@CLEVEMED.com.
Trace Touch Screen Study
The Trace Center at the University of Wisconsin-Madison is looking for individuals who have movement disorders of their arms or hands to participate in a study for evaluating usability of information technology, If you would like to help the Trace Center in making information technology devices that are more accessible, please contact Bob Meyer at 608-263-3827 or send an email to: meyer@trace.wisc.edu.
Riboflavin Study
Riboflavin may be beneficial in the treatment of tremor. Neurologist Esther Baldinger, M.D. and Long Island College in Brooklyn, NY are recruiting essential tremor patients who are able to travel to Brooklyn for a follow-up double blind study to further assess the effectiveness of Riboflavin for the treatment of ET. For additional study information please contact Dr. Baldinger at (718) 232-1570.
Pregablin Study
Sponsors and Collaborators Pfizer, and the University of South Florida in Tampa are conducting a double blind, randomized, placebo-controlled, crossover study to assess the effectiveness and safety of PGB to treat symptoms of ET. For more recruitment information please contact Kelly Sullivan, MSPH at 813-974-5909 or send an email to kbarber@hsc.usf.edu.
Huntington Movement Disorders Program
HMDP is participating in the clinical study of the Libra DBS system to treat arm and or hand tremor in adults with essential tremor. For those who are interested in participating, please contact Jennifer Birch at 626-535-9552.
PenAgain
The ergonomic design by inventor Colin Roche, owner of Pacific Writing Instruments, that may be effective for writer's cramp and hand tremor. The Twist 'n Write pencil product for children is helpful for fine motor skills. PenAgain was well received at both the 60th AAN Meeting the Movement Disorder Society 12th International Congress.
JobEnable
JobEnable.com´s goal is to assist individuals with disabilities in finding employment. Job seekers are able to post resumes and search the job database for available positions. For information and support complete the form available on the website or email support@jobenable.com.
Solstice Neurosciences Launches MYOBLOC University
New online learning tool fills the knowledge gap on Botulinum Toxin Type B for cervical dystonia.
Alseres Pharmaceuticals Initiates POET-2 Program
The two-part clinical trial program has begun in seven Centers to acquire a set of Altropane images which will be used to train the expert readers.
ANA Annual Meeting: Salt Lake City
Tremor Action Network
is participating in the American Neurological Association 133rd Annual Meeting September 22 and 23. Stop by to discuss the services TAN provides, and to receive the Movement Disorders Awareness Quality of Life DVD in English and Spanish, Spikes & Spasms quarterly newsletter, PenAgain, and informative resources. We are Shaking the World to Find a Cure.
