ࡱ> npklmU 'bjbjnn zaa """8ZDd"*(*:dddrrri*k*k*k*k*k*k*$,L/*rPP"rr*dd*H H H rddi*H ri*H H &h'dЬ><R]'U**0*m'X0Z0 '0'rrH rrrrr**`rrr*rrrr0rrrrrrrrr B : National Organization for Rare Disorders (NORD) with funding from Lundbeck and public donations Announces Research Seed Money Grant (up to $30,000) for Stiff Person Syndrome Abstract Submission Deadline: October 21, 2016  HYPERLINK "mailto:research@rarediseases.org" research@rarediseases.org NORD, with funding from Lundbeck and public donations, is accepting applications for funding up to $30,000, for scientific research studies and/or clinical research studies related to Stiff Person Syndrome. Stiff Person Syndrome is an acquired neurological disorder characterized by progressive muscle rigidity and repeated painful muscle spasms. The spasms may occur randomly or be triggered by various events such as a sudden noise or light physical contact. In most cases, other neurological signs and symptoms do not occur. The severity and progression of symptoms vary significantly from person to person. Although the cause of SPS is unknown, it is thought to be an autoimmune disorder and sometimes occurs in conjunction with other autoimmune disorders. The condition typically becomes apparent between 30 and 60 years of age but has been reported in children and older individuals, as well. At this time, the treatment of SPS is directed toward the specific symptoms that are apparent in each individual. Research Objectives The purpose of the NORD Research Grant Program is to encourage meritorious scientific and clinical studies designed to improve the diagnosis or therapy of rare orphan diseases. Grants will be awarded to academic researchers to initiate small scientific research studies or clinical trials, the results of which could be used to obtain funding from NIH, FDA or other funding agencies, or to attract a corporate sponsor. Procedures or proposed therapeutic trials may be new, based on recent biochemical or pharmacological evidence, or in preliminary states of clinical investigation. Evaluation of proposals will include careful consideration of protocol design, objectiveness of parameters measured, and statistical evaluation proposed. Protocols that will focus on cause, early detection, diagnosis, or treatment (pharmacological, devices, surgery, or dietary) will be given priority. Application Procedure Letter of Intent Deadline: October 21, 2016 All of the following application elements must be received by October 21, 2016. Incomplete applications may not be considered. For electronic submission (preferred), all application elements should be merged into a single PDF file (PDF required for document security) and sent to  HYPERLINK "mailto:research@rarediseases.org" research@rarediseases.org with NORD Abstract Proposal as the subject line. Alternatively, applications can be mailed to: NORD Research Grants Program 55 Kenosia Avenue Danbury, CT 06810 USA Tables on pages 3 through 5 of this document, completed in full Initial letter of intent (1 page) Abstract of the proposal (1 page) Brief budget outline Cogent reasons why NORD funding is essential (explain applicants particular interest in this grant) Biographical sketch and bibliography for Principal Investigator (forms provided) List of co-investigators (if applicable) FULL PROPOSALS Full proposal invitations will be announced via email in late November 2016. Application requirements for full proposals will accompany these announcements. The deadline for full proposals will be mid/late January 2017. AWARDING OF GRANT Award announcements will be made in late February 2017, via email. Funding will begin after all necessary documents (IRB forms, patient consent forms, signed application agreements) have been received by NORD. FURTHER INFORMATION If the study involves human subjects, copies of the Informed Consent form and the Institutional Review Board committee report will be required from each site involved in the study, before payment can begin. Clinical drug trials must meet requirements established by the Food and Drug Administration (FDA). If the study involves human gene therapy, a copy of the NIH Recombinant DNA Advisory Committee (RAC) or waiver of review will be required. Duplicate/overlapping funds from any other private or public source are not to be used. ABOUT NORD The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations and individuals dedicated to helping people with rare orphan diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, service, and research. Besides advocating for increased government research funding and referring patients to clinical trials and genetic investigations, NORD funds clinical research grants on new treatments for rare diseases. To receive notification of future funding opportunities through NORD, email complete mailing address to: research@rarediseases.org. Name of ResearcherResearchers EmailResearchers Mailing Address City/State/Zip Country Researchers Telephone Researchers FaxInstitution(s) Where Research Will Be Conducted City, State, Country of Institution(s)Title of ProjectTerm of Project (should reflect proposal)( 1 Year ( 2 YearsFunding Amount Requested (Not to exceed $30,000)Will Research Involve Human Subjects?[ ] YES[ ] NOHow Did You Hear About This RFP? ( NORD Member Organization ( Website Posting ( Email Subscription Service ( Referral from Colleague ( Medical/Research Publication ( Other (please specify below)Please Be As Specific As Possible:Applicant Signature (required)Application ChecklistYes/NoInitial letter of intent (1 page)Abstract of the proposal (1 page)Brief budget outline. Do not include PI salary, overhead, or indirect costs. Funding can be used to cover expenses such as staff salary, technical assistance, supplies, and small equipment.Cogent reasons why NORD funding is essential (explain applicants particular interest in this NORD grant opportunity)Biographical sketch and bibliography (forms provided, see pages 4 & 5)List of co-investigators (if applicable) Biographical Sketch Please provide a biographical sketch and bibliography for the Principal Investigator. Applicant may use this form or the NIH Biosketch form. Please modify the form to include, when applicable, the following: Name Position/Title Education/Training Begin with baccalaureate or other initial professional education and include postdoctoral training.Institution and LocationDegreeYear(s)Field of StudyResearch and Professional Experience Concluding with present position, list in chronological order previous employment, experience, and honors. Include present membership on any advisory committee. Honors and Awards  Bibliography Publications: List in chronological order the titles, all authors, and complete references to all publications in the last three years and to representative earlier publications pertinent to this application. If the list of publications exceeds two pages, select the most pertinent publications.  CO-INVESTIGATOR(S) Name of ResearcherResearchers TitleResearchers Institution/CompanyResearchers Email Name of ResearcherResearchers TitleResearchers Institution/CompanyResearchers Email Name of ResearcherResearchers TitleResearchers Institution/CompanyResearchers Email To receive notification of future funding opportunities through NORD, email complete mailing address to: research@rarediseases.org.     National Organization for Rare Disorders 2016 Abstract Proposal Stiff Person Syndrome National Organization for Rare Disorders, (NORD) 55 Kenosia Avenue, Danbury, CT 06810 USA HYPERLINK "../../../../../talarto1/AppData/Local/Microsoft/Windows/Temporary Internet Files/Content.Outlook/V2ZX1PS2/www.rarediseases.org"www.rarediseases.org  Tel: 203-744-0100 Fax 203-263-9938 Page  PAGE 5 of  NUMPAGES \* MERGEFORMAT 6  Request for Proposals /4ACDLQabcmwx¾֏zm`WP hu hKh{'5CJaJh>0J5CJ\aJh{'0J5CJ\aJ hE*h]1 hu h]1 hu hE*hh]15hhSg5hhwh5hu h]15 hu hwhhu hwh5hu hwh5CJhhXZ5 h"n5 h{'5 h5hhXZ5 hu 5 hr5 h>5hhwh5BCbcwx; < = > 3 4 5 I $a$gdN"%gd]1gdgd{'$a$gdA$a$gd]1gdu gdu $a$$a$gdu  9 : ; < = > B Q U V ^ s v   3 4 5 I ꧹{tmm hh]1 hwh5CJhu h"nPJ h{'PJh{'h{'PJh]1h<*oh> hh]1h{' hh hhXZ hh>hyfQhwh hu hwhhu hA0Jjhu hAU hu hAh"n hh Mh~ hhwh* =\r +HO9OU NOhioGIsǿ|xxtxpth[h~hN"%hxhN"%5CJ hxhN"%56CJ hN"%5hxhN"%0J5jhxhN"%5UhxhN"%5>* h~5>*hxhN"%5hxhN"%CJhG<hN"%5CJ h~5CJ hN"%5CJhN"%5;CJhw hh]1h]1,Qs`6vw[\p? & FgdN"% & FgdN"%^gdN"%gdN"%sw\pVXYZ[mn ./OPQbc)>FóҦҦҜvgh ]hwCJOJQJaJhwCJOJQJaJhhN"%CJ OJQJ jhN"%CJOJQJhN"%CJOJQJ jhwCJOJQJh5%hw6CJOJQJaJh5%hwCJOJQJaJhwCJOJQJhw h#6 hN"%6hYhN"%CJ h~ hN"%5hN"%(-WYnoplxkd$$IfTF0&X04 FaytIT <<$IfgdIgdN"% & FgdN"% yxkd$$IfTF0&X04 FaytIT <<$IfgdIyyy <<$IfgdIxkd6$$IfTF0&X04 FaytITyy <<$IfgdIxkd$$IfTF0&X04 FaytITyy <<$IfgdIxkdl$$IfTF0&X04 FaytITyyy <<$IfgdIxkd$$IfTF0&X04 FaytIT GHyy <<$IfgdIxkd$$IfTF0&X04 FaytITHIZ[yy <<$IfgdIxkd=$$IfTF0&X04 FaytIT[\}} $IfgdIxkd$$IfTF0&X04 FaytITyy <<$IfgdIxkds$$IfTF0&X04 FaytIT yii$<<$Ifa$gdI <<$IfgdIxkd$$IfTF0&X04 FaytIT  .bqfWJAA $IfgdOn  $IfgdOn  <$IfgdOn <$IfgdOnkd$$IfTFFi&XW W 0    4 FaytITww <<$IfgdOnzkdz$$IfTF0&X04 FaytOnT'(yy <<$IfgdOnxkd$$IfTF0&X04 FaytOnT()?Ftt$xx$Ifa$gdIzkd$$IfTF 0&X04 FaytOnTFGjki\L$<<$Ifa$gdI <<$IfgdIkda $$IfTF      0 !&f!    t04 FapytITFG_ijlPQR  - = > @ B V '!(!)!ީޜޜޏޅxtltdZhwCJOJQJhwOJQJhpthw>*hwh ]hw5;CJ\hw5:CJ\hyhwCJOJQJhwMhwCJOJQJhS~&hw>*CJOJQJhw5CJOJQJ\h%hwCJOJQJh8zhwCJOJQJhwCJOJQJhw5CJOJQJh ]hwCJOJQJ#kltd$<<$Ifa$gdI <<$IfgdI}kdE $$IfTF      U0 !&f! t04 FaytITPQtd$<<$Ifa$gdI <<$IfgdI}kd $$IfTF      U0 !&f! t04 FaytITQRvf$<<$Ifa$gdI <<$IfgdI{kd $$IfTF      0 !&f! t04 FaytIT  vf$<<$Ifa$gdI <<$IfgdI{kdH $$IfTF      0 !&f! t04 FaytIT  > ? vf$<<$Ifa$gdI <<$IfgdI{kd $$IfTF      0 !&f! t04 FaytIT? @ A V W (!)!.!=!>!wwwjbUUU <<$IfgdIdgdw d@&]gdw $d@&a$gdw{kd $$IfTF      0 !&f! t04 FaytIT )!.!=!?!A!T!!!!!!!"""""""""###$$$$!$3$4$7$$$$%c%j%%%%꽹깊}skhP+hw5hP+hw56h ]hw5;CJ\hw5;CJ\hwCJOJQJ\h;&hw5:CJ\h;&hw5;CJ\hwhwOJQJhw>*CJOJQJh ]hwCJOJQJhnhwCJOJQJhwCJOJQJhw5CJOJQJ(>!?!@!A!T!!!!!!yiiii$<<$Ifa$gdIxkdC$$IfTF0T ( 04 FaytIT <<$IfgdI !!!!!!!J===== <<$IfgdIkd$$IfTF4^rT M!(`  F04 FaytIT!!"""""J===== <<$IfgdIkd$$IfTF4rT M!(   F04 FaytIT"""""""""""""""yxkdn$$IfTF0T ( 04 FaytIT <<$IfgdI"""""""$$$wrf^UPgdw $gdw$a$gdw $d@&a$gdwgdwzkd$$IfTF0T ( 04 FaytIT <<$IfgdI $$$!$4$5$6$J$K$yy <<$IfgdI $d@&a$gdwgdwgkd$$IfTF%dp *04 FaytITK$L$_$`$yy <<$IfgdIxkd,$$IfTF0&X04 FaytIT`$a$$$yy <<$IfgdIxkd$$IfTF0&X04 FaytIT$$$$yy <<$IfgdIxkdb$$IfTF0&X04 FaytIT$$$$$$tt <<$IfgdIgdwxkd$$IfTF0&X04 FaytIT$$$$yy <<$IfgdIxkd$$IfTF0&X04 FaytIT$$$$yy <<$IfgdIxkd3$$IfTF0&X04 FaytIT$$$$yy <<$IfgdIxkd$$IfTF0&X04 FaytIT$$$%%%tt <<$IfgdIgdwxkdi$$IfTF0&X04 FaytIT%%)%*%yy <<$IfgdIxkd$$IfTF0&X04 FaytIT*%+%L%M%yy <<$IfgdIxkd$$IfTF0&X04 FaytITM%N%a%b%yy <<$IfgdIxkd:$$IfTF0&X04 FaytITb%c%d%e%f%g%h%i%j%%%%%%ytrgd]1$a$gdwgdwxkd$$IfTF0&X04 FaytIT %%%%%%%%%%%%&'&,&=&>&S&T&U&&&&&:';'<'}q}a}Na%jphwCJOJQJUaJjhwCJOJQJUaJhN"%CJOJQJaJhwCJOJQJaJhV"&hwh{'56CJOJQJ^JaJ&hwhw56CJOJQJ^JaJhn*hw5OJQJhn*hwOJQJhwOJQJ jhn*hwUmHnHuhujhuUh]1hw5:CJ\%%%%%%%%'&>&T&U&&&''''$&d$P$a$gd"n$a$gd"ngdw )gdw p#gdw$&d Pa$gd]1$&d P a$gdw$a$gdw<'R'S'V'v'}'~''''''''''''''''''''ӽxtlh^htZVh]1huh"nCJ OJQJh"njh"nUhV"jhwCJOJQJU*jhwCJOJQJUjhwCJU* h#CJOJQJmHnHu*hwCJOJQJjhwCJUh[CJOJQJaJhwCJOJQJaJjhwCJOJQJUaJ hThw0JCJOJQJaJ''''gd]1gd"n1 0:p]1/ =!"#$% Ff<ӤHhU"JFIFHH -ExifMM*bj(1r2i ' 'Adobe Photoshop CS3 Macintosh2009:04:27 10:44:48&(. 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