January 2012 - The ALS Association Greater Sacramento

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ResearchPage 6Open Enrollment Announced for Cytokenetics CK-2017357 ALS Drug TrialCytokinetics, Incorporated, manufacturer of the FDA-designated orphan drug CK-2017357, recently announced that ithas opened enrollment in a third Phase II clinical trial for people with ALS. The primary objective of this phase of theclinical trial is to evaluate the safety and tolerability of CK-2017357. A secondary goal of the trial is to evaluate theALSFRS-R, other measures of pulmonary function, muscle strength and fatigue, relationships between dose, plasmaconcentrations and functional effects, and physician and patient global assessments in the participants.This clinical trial is a double-blind, placebo-controlled, ascending dose study to evaluate the safety, tolerability, andpharmacological effects of multiple ascending doses of CK- 2017357. At this time, an estimated 24 patients with ALSwho are also receiving the drug riluzole are scheduled to be enrolled at approximately 10 study centers in the UnitedStates. The trial’s participants will be randomized to one of two dosing groups and receive twice daily doses of CK-2017357 or a placebo. Clinical assessments will occur at pre-determined times during the course of the treatment, andparticipants will also take part in follow-up evaluations one week after receiving their final dosage.For information about enrollment, go to www.clinicaltrials.gov. Click on "Search for Clinical Trials" and enter "CK-2017357 and ALS." After clicking on the title of the clinical trial and scrolling down to the "Contacts and Locations" section,you will see the names of the sites participating in the trial. If one is convenient for you and is indicated as"Recruiting," you may contact that site directly or email jmasonek@cytokinetics.com for additional information.In addition, Jeremy M. Shefner, M.D., Ph.D. made a presentation on CK-2017357 at the 22nd International Symposiumon ALS/MND in Sydney, Australia. Results showed those in the trial tolerated the daily dosages of CK-2017357 withminimal side effects. Some recipients experienced mild dizziness during the initial phase of the treatment, but the dizzinessappeared to cease as dosing continued during the two-week treatment period.New Issue of Research ALS Today AvailableThe Fall 2011 issue of Research ALS Today is now available. Published twice a year, Spring and Fall, the magazineprovides articles and information about current ALS research and activities of The ALS Association. Manyof the articles are written by investigators, who are making progress in the search to answer important questionsabout amyotrophic lateral sclerosis. Research ALS Today is edited by ALS Association Chief ScientistLucie Bruijn, Ph.D., a former ALS research investigator who remains focused on the cutting edge of ALS research.This issue highlights resources and journal news and features the following topics:TREAT ALS Research PortfolioRNA ProcessingCall for Research AbstractsSafenowitz Post-Doctoral FellowshipsStrike Out ALS Wristbands are NOW IN STOCK!!After many requests the office now has “Strike Out ALS” wristbands in bothadult and children’s sizes. If you would like to order your “Strike Out ALS”wristbands for $1 each plus shipping costs please call Alycia at (916) 979-9265.For more information on ALS research please visit our website at www.alssac.org
ResourcesHelpful Web SitesAmericans with Disabilities Actwww.usdoj.govThe Joint Commissions on the Accreditation HealthcareOrganizationswww.jointcommission.orgParalyzed Veterans of Americawww.pva.orgMedicarewww.medicare.govNational Association of Area Agencies on Agingwww.n4a.orgU.S. House of Representativeswww.house.govU.S. Senatewww.senate.govLegislation Statusthomas.loc.govCalifornia Department of Veterans Affairs (CDVA)Tele: 800-952-5626 (toll free) Web: www.cdva.ca.govReno VA Medical CenterSCI Telehealth Clinic Tele: 775-786-7200 ext. 1378VA Northern CaliforniaJulie Moua, MSW, SCI/D Coordinator Tele: 916-843-9130Social Security AdministrationTele:800-772-1213 (toll free) Web:www.ssa.govFree App for the IPADDeveloped by an ALS Patient. For more information pleasevisit:www.verballyapp.comIn Memoriam:Page 7Need specialized utensils tohelpClick on the link below for more information.with eating?Good Grips makes easy to use, inexpensive utensils.http://www.activeforever.com/search.aspx?searchterm=oxo&cm_mmc=g-_-kitchen%20aids-_-oxo%20good%20grips-_-good%20grips%20utensils&gclid=CPymqdrepa0CFQVvhwod_0WqlAAdaptive Clothing for Men and WomenClick here for more information:http://www.silverts.com/als-clothing/Breath a Little EasierHill-Rom companies manufacture anddistribute The Vest® Airway ClearanceSystem, a medical device that assistschildren and adults with mobilizingsecretions that may contribute to, orcomplicate, their respiratory conditions.If not removed, retained secretionsmay lead to increased rates ofrespiratory infections, hospitalizations,and reduced lung function.Learn more about the Vest by clicking here:http://www.thevest.com/patients/We extend our deepest sympathy and support to thosefamilies and friends who have recently lost their lovedones to ALS. Please contact us for support if we canhelp you with the grieving process.Our PALS:Gary WatkinsJohn OsterlundFrancisco BaltazarRick CordeiroJohn AllenLove, The ALS Association, Greater Sacramento ChapterDid you know that ALS Support Group Meetings offer practical solutions to improve the livesof PALS? Now you do!
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January 2012 - The ALS Association Greater Sacramento

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