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Presented by the FSH Society and Global PartnersJune 20, 2017
COMMUNICATIONS TOOLKIT
1 Communications Toolkit 2017
World FSHD Day Communications Toolkit WhatisFSHD? 2Facts&Statistics 3WhatisWorldFSHDDay? 4 WorldFSHDDayLogos 5LocalWorldFSHDDayEventMediaAlert 6 Campaign:OrangeSliceSelfies 7
• MediaPitchTemplate• SocialMediaPromotion
Campaign:LighttheNightOrange 8-9
• LettertoYourLocalOfficials• MediaPitchTemplate• SocialMediaPromotion
2 Communications Toolkit 2017
What is FSHD?
Symptomsoffacioscapulohumeralmusculardystrophy
AcommonfirstsignofFSHD,asymptomaticscapularwinginganddifficultyreachingabovetheshoulderlevel.Facioscapulohumeralmusculardystrophy(FSHD)isbroadlycharacterizedasaneuromusculardisease(NMD),asarealltypesofmusculardystrophy.Musculardystrophiesaremarkedbyprogressiveskeletalmuscleweakness,defectsinthebiochemical,physical,andstructuralcomponentsofmuscle,andthedeathofmusclecellsandtissue.FSHDgetsitsnamebecausetheprogressivelossofskeletalmuscleisusuallynoticeableacrossfacial(facio),back(scapula),and
upperarm(humeral)muscles.Thecore,hipgirdle,andlegscanalsobeaffectedinmanypatients.Muscleweaknessoftensetsinasymmetrically,affectingonlyonearmoroneleg,forexample,andasaresultmaybemistakenlyattributedtostrainorasportsinjury.Symptomsmaymanifestearly,sometimesyearsbeforeaformaldiagnosis.Thesecan(butdon’talways)include:
• Inabilitytosmile;• Inabilitytowhistle;• Inabilitytosipthroughastraw;• Eyesthatdon’tclosefullyduringsleep;• Difficultywithsuchexercisesassit-ups
andpull-ups;• Shoulderbladesthat“wing”out;
• Difficultyraisingarmaboveshoulderheight;
• Footdrop(footdorsiflexionweakness);• Weaklowerabdominalmuscles,
protuberantabdomen;• Curvedspine(lordosis).
Patientscanalsoexperience:
• Episodesof“malaise”or“burningpain”inmuscles;• Severepainfromchangesinpostureandstrainonremainingmuscles;• Chronicfatigue;• Respiratoryinsufficiency;• Hearingloss;• Coats’disease(retinaltelangiectasis).
Additionalinformation:
• DownloadabrochureAboutFSHD• DownloadaPhysicalTherapyandFSHDbrochure• Diagnosis• Genetictesting• InfantileFSHD
3 Communications Toolkit 2017
Facts and Statistics
Facioscapulohumeral(fā-sh(ē-)ō-ˌskap-yə-lō-ˈhyüm-(ə-)rəl)
FSHDgetsitsnamebecauseofthetypeofprogressivelossofallskeletalmuscle,whereweaknessisusuallynoticeableacrossfacial(facio),back(scapula),andupperarm(humeral)muscles.FSHDisthemostprevalentofthenineprimarytypesofmusculardystrophyaffectingadultsandchildren.Itisageneticdisorder.Previously,studiesestimatedtheprevalenceataround1in20,000people,buta2014Dutchstudyreportedamuchhigherprevalenceof1in8,333.
Estimatedtoaffectabout870,000individualsworldwide,theactualnumberofindividualswithFSHDcouldbesignificantlyhigherduetoundiagnosedcases.
FSHDisworldwideindistribution,affectsbothsexesequally,andhasnoparticularracial,geographic,orethnicdistribution.
Theageofonsetcanrangefrominfancytoadulthood.Theeventualextentanddegreeofmusclelossisalsohighlyvariable.TheprognosisforFSHDincludesalossofmuscularstrengththatlimitsbothpersonalandoccupationalactivities,andapproximatelyone-quarterofpatientsover50yearsofagerequiretheuseofawheelchair.
AlthoughtheprogressionofFSHDisquitevariable,itisusuallyrelativelyslow,withmostpatientsdevelopingnoticeablemuscleweaknessbytheageof20inmales,andbytheageof30infemales.
ThirtypercentofnewFSHDpatientshavenopriorfamilyhistoryofthediseaseandarearesultofcongenitalspontaneousgeneticmutation.Oncepresent,however,FSHDisgeneticallytransmissibleinanautosomaldominantfashion.Thismeansthatanaffectedparenthasa50percentchanceofpassingthegeneticdefectontoeachchild.
Approximately95percentofFSHDcasesareknownasType1(chromosome4-linkedFSHD;alsocalledFSHD1orType1A).FSHD1islinkedtodeletionsofD4Z4unitsonchromosome4.
Theremaining5percentofFSHDcaseshavenormal-lengthD4Z4regionsonchromosome4andarecalledType2(FSHD2,alsocalledType1B).AmajorityofFSHD2hasnowbeenlinkedtomutationsonagenecalledSMCHD1,onchromosome18.Therearestill~1%ofFSHDcasesofunknowngeneticcause.
BothFSHD1andFSHD2havesimilarsymptoms.Eventhoughthegeneticcausesaredistinct,bothtypesappeartohavethesameendresultatthemolecularlevel:theycausetheD4Z4regiontohaveless-than-normallevelsofmethylation,whichallowstheDUX4genetogetexpressed.Soinspiteofdifferentgenetics,FSHD1andFSHD2appeartobethesamedisease.
4 Communications Toolkit 2017
What is World FSHD Day? WorldFSHDDay
EveryJune20,wegathertocelebrateWorldFSHDDaytoraiseawarenessforFacioscapulohumeralmusculardystrophy(FSHD).Participantsfromacrosstheglobe,advocacyorganizations,includingindividualswithFSHD,aswellastheirfamiliesandsupporters,cometogetherinvariouswaystoraiseawarenessforFSHD,oneofthemostprevalentformsofmusculardystrophy.TheFSHSocietyandfellowmembersofFSHDChampions,theinternationalallianceofFSHDadvocacyorganizations,looktorecognizeindividualswithFSHD,theirfamilies,physicians,researchersandsupporterswithvariouslocalactivities,sharingtheofficiallogo,andpatientstories.
In2017,theFSHSocietywillbeembarkingonasocialmediacampaign,ourOrangeSliceSelfiescampaign.Supportersareencouragedtoshareselfiesusingorangeslicesinplaceoftheirsmiles,using#WorldFSHDDay.Inaddition,weencouragesupporterstoreachouttotheirlocalDepartmentofPublicWorkstolightupnotablelandmarksorangeinhonorofpatientsandfamilies.Formoreinformationandtipsonhowtopresentthisasktoyourlocalofficials,pleasecontinuereadingthistoolkit.TolearnmoreaboutWorldFSHDDayortofindaneventnearyou,visittheFSHSociety’sWorldFSHDDayFacebookeventpage.ToassistinpromotingyourowneventaspartofWorldFSHDDay,pleasecontinuereadingthroughthistoolkit.
5 Communications Toolkit 2017
World FSHD Logos OfficialLogosJPEG:
PNG:
6 Communications Toolkit 2017
Local Event Media Alert
[GROUP]toHost[EVENT]CelebratingSecondAnnualWorldFSHDDay[DATEANDLOCATION]WHAT: On[DATE],join[ORGANIZATION]atthe[EVENTNAME]in[LOCATION]tocelebratethe
secondannualWorldFSHDDaytoraiseawarenessandrecognizeglobalprogressbeingmadetowardsfindingacureforFacioscapulohumeralMuscularDystrophy(FSHD).[EVENT]isalocalfundraiserinsupportoftheFSHSocietyincelebrationofWorldFSHDDayonJune20,2017.Photoopportunitieswillalsobemadeavailable.
Families,friendsandsupportersarewelcome,andallnetproceedsbenefittheFSHSociety,anaward-winningnon-profitandgloballeaderinthequesttotreatandcureFSHD.TodonateonlinetotheFSHSocietyinsupportofWorldFSHDDay,pleasevisitwww.fshsociety.org.
WHEN: DAY,MONTHXXfromTIMEtoTIMEam/pm.WHERE: NAMEOFLOCATION ADDRESSOFLOCATION
WHY: 2017marksthesecondannualWorldFSHDDaythroughactivitiesbypatients,
researchersandorganizationsunitingtoeducatethepublicandadvocateforresearchtofindacure.Facioscapulohumeralmusculardystrophy,FSHD,isageneticdisorderthatprogressivelyleadstotheweakeningofskeletalmuscles,andmayrendertheinabilitytosmile,orwhistle.Typicallybeginninginteenageyearswiththelossofmusclesintheface(facio),shoulders(scapula),upperarms(humerus),legsorcore.FSHDcanspreadtoanymuscleandthereisnocure.Itisthemostprevalentformofmusculardystrophy,affectingmorethan870,000worldwide.Tolearnmore,visitthenon-profitFSHSocietyatwww.fshsociety.org.
Contact: [LOCALORGANIZERONSITECONTACTINFORMATION] FIRSTNAME,LASTNAME EMAIL PHONEAbouttheFSHSociety:TheFSHSocietyisaworldleaderincombatingFSHmusculardystrophy,ageneticdisorderthatprogressivelyleadstotheweakeningofskeletalmuscles,andmayrendertheinabilitytosmile,orwhistle.Thenon-profithasprovidedmillionsofdollarsinseedgrantstopioneeringresearchworldwide,creatinganinternationalcollaborativenetworkofpatientsandresearchers.TheFSHSocietyseekstoserveasasourceofinformationandsupportforallpatientsandfamilieswithFSHD;actasadrivingforceinthedevelopmentofresearchdirectedtowardstreatments.Fornineconsecutiveyears,theSocietyhasreceivedtheCharityNavigator’sfour-starrating,thehighestdistinctionheldbylessthantwopercentofnon-profitorganizationsinthecountry.Formoreinformationvisithttp://www.fshsociety.orgorcall(781)-301-6649.
###
7 Communications Toolkit 2017
Campaign: Orange Slice Selfies MediaPitchSubject:WearyourOrangeSliceSelfietoCelebrateWorldFSHDDayHiX,OnJune20,residentsof[TOWN]willbepostingselfieswithorangeslicesassmilesviasocialmediaincelebrationofWorldFSHDDay,andtohonorpatientsandfamilieswhosufferfromFSHmusculardystrophy.2017marksthesecondannualWorldFSHDDaythroughactivitiesbypatients,researchersandorganizationsunitingtoeducatethepublicandadvocateforresearchtofindacure.WithorangeastheofficialcolorofWorldFSHDDay,pleaseconsiderpostingyourownOrangeSliceSelfiesonJune20thwiththeofficialhashtag,#WorldFSHDDayandtaggingthenon-profitcommittedtofindingacurethe,FSHSociety,onTwitter,FacebookandInstagram.Facioscapulohumeralmusculardystrophy,FSHD,isageneticdisorderthatprogressivelyleadstotheweakeningofskeletalmuscles,andmayrendertheinabilitytosmile,orwhistle.Typicallybeginninginteenageyearswiththelossofmusclesintheface(facio),shoulders(scapula),upperarms(humerus),legsorcore.FSHDcanspreadtoanymuscleandthereisnocure.Itisthemostprevalentformofmusculardystrophy,affectingmorethan870,000worldwide.Tolearnmore,visitthenon-profitFSHSocietyatwww.fshsociety.org.Attached,pleasefindafeworangesliceselfiesofmyfamilyandfriends.Thanks,XXSocialMediaPostsFacebookSuggestions
• Markyourcalendars,June20,2017isWorldFSHDDay!ThedayservestogatherindividualswithFSHD,theirfamiliesandsupporters,andmembersofinternationalchapters.Tolearnmore,checkouthttps://www.fshsociety.org/
• OnJune20,I’mraisingawarenessforWorldFSHDDaybysharinganOrangeSliceSelfie!ShareaphotoofyourOrangeSliceSelfietoshowyoursupport.
• TodayisWorldFSHDDay!Touniteourcommunityandraisephysicianawarenesstohelpbetterdiagnoseandtreatsymptoms,shareaphotoofyourOrangeSliceSelfieandtagtheFSHSociety!
TwitterSuggestions• Markyourcalendars,6/20is#WorldFSHDDaytouniteallthosewith#FSHDacrosstheglobe!• I’mwearingmyOrangeSliceSelfietoraiseawarenessof#WorldFSHDDayon6/20!Shareyour
smilew@FSHSociety• Didyouknow#FSHDaffects870Kpeopleworldwide?I’msharingmyOrangeSliceSelfieon6/20
toraiseawarenessfor#WorldFSHDDay!• Todayis#WorldFSHDDay!PutonyourOrangeSliceSelfietocelebrate!• It’s#WorldFSHDDay!Tolearnmoreabout#FSHDvisithttps://www.fshsociety.org/
8 Communications Toolkit 2017
Campaign: Light the Night Orange LettertoYourLocalDepartmentofPublicWorksDateAddressoflocalpublicworksofficeDearX,MynameisNAMEandIserveasTITLE/MEMBERoftheBoston-basedFSHSociety.Iamwritingtoaskforaveryspecialfavor—tolightupBUILDINGthisJune20thinhonorofpatientsandfamiliesaroundtheworldwhosufferfromFSHmusculardystrophy.Thisyear,wewillbecelebratingthesecondannualWorldFSHDDaythroughactivitieswithpatients,researchers,andorganizationsworldwideunitingtoeducatethepublicandadvocateforresearchtofindacure.Wewouldgreatlyappreciate2017WorldFSHDDaytoserveasanopportunitytospreadawarenessofFSHD,especiallyinCITY,andtothatend,wewouldliketoaskyoutokindlyarrangefortheBUILDINGtobelituponthenightofJune20thabrightorange,theofficialcolorforWorldFSHDDayIfyoucanaccommodateourrequest,wewillpromoteitthroughaworld-widesocialmediacampaign,sharingimagesofBUILDINGintheWorldFSHDcolorsoverFacebook,Twitter,andInstagram.OveradozenbiotechandpharmacompaniesinthecountryareworkingontreatmentsforFSHD,andwewillreachouttotheminadvancetoenlisttheirhelpinspreadingthemessage.Thiswouldbeanincrediblypowerfulwaytorallyourcommunity,withtheBUILDINGgivingvisibilityonascalethattheFSHDcommunityhasneverhadbefore.TheFSHSocietyistheworld’sleadingnonprofitorganizationadvocatingfortreatmentsforfacioscapulohumeralmusculardystrophy.FSHDisthemostcommonmajorformofmusculardystrophy,causingprogressivemusclelossanddisability.Itaffectsalmostamillionpeopleworldwideandthereisnocure,butthankstorecentadvancesinresearch,wehopetreatmentswillbedevelopedsoon.FormoreinformationontheFSHSociety,pleasevisithttps://www.fshsociety.org/.WehopethatyouwillconsiderstandingwithFSHDpatientsacrossAmerica,especiallyrighthereinCITY,bylightingtheBUILDINGorangeintheirhonorthisJune20th.Respectfully,Signature
9 Communications Toolkit 2017
MediaPitchSubject:[BUILDING]lightsuporangeforWorldFSHDDay,6/20HiX,OnJune20,the[BUILDING]willlightuporangeincelebrationofWorldFSHDDay,andtohonorpatientsandfamiliesin[CITY]andaroundtheworldwhosufferfromFSHmusculardystrophy.2017marksthesecondannualWorldFSHDDay.Thecelebrationwillincludeactivitiesbypatients,researchers,andorganizations,unitingtoeducatethepublicandadvocateforresearchtofindacure.WithorangeastheofficialcolorofWorldFSHDDay,pleaseconsiderashotoftheorange[BUILDING]ascoverageonJune20.Facioscapulohumeralmusculardystrophy,FSHD,isageneticdisorderthatprogressivelyleadstotheweakeningofskeletalmuscles,andmayrendertheinabilitytosmile,orwhistle.FSHDtypicallybeginninginteenageyearswiththelossofmusclesintheface(facio),shoulders(scapula),upperarms(humerus),legsorcore,andcanspreadtoanymuscleandthereisnocure.Itisthemostprevalentformofmusculardystrophy,affectingmorethan870,000worldwide.Tolearnmore,visitthenon-profitFSHSocietyatwww.fshsociety.org.IfinterestedinraisingawarenessofWorldFSHDDay,we’realsoencouragingsupporterstotakeanorangesliceselfieandpostonsocialmediaonJune20withtheofficialhashtag#WorldFSHDDay.Ifyoudo,pleasetagtheFSHSocietyonTwitter,FacebookandInstagram.Thanks,XXSocialMediaPostsFacebookSuggestions
• Markyourcalendars,June20,2017isWorldFSHDDay!ThedayservestogatherindividualswithFSHD,theirfamiliesandsupporters,andmembersofinternationalFSHSocietychapters.Tolearnmore,checkouthttps://www.fshsociety.org/
• OnJune20,[CITY]israisingawarenessforWorldFSHDDaybylighting[BUILDING]orange!Stopbyat[TIME]toshareaphoto
• TodayisWorldFSHDDay!Touniteourcommunityandraiseawarenesstohelpbetterdiagnoseandtreatsymptoms,the[BUILDING]islightingorangeforthosewithFSHD.Besuretostopby[BUILDING]at[TIME]toshareaphotowiththeofficialhashtag#WorldFSHDDay
TwitterSuggestions• Markyourcalendars,6/20is#WorldFSHDDaytouniteallthosewith#FSHDacrosstheglobe!• [BUILDING]willbelightinguporangetoraiseawarenessto#WorldFSHDDayon6/20!Stopby&
shareaphototoshowsupport• DYK:#FSHDaffects870Kpeopleworldwide?[BUILDING]willbelightingtheskyorangeon6/20
toraiseawarenessfor#WorldFSHDDay!• Todayis#WorldFSHDDay!The[BUILDING]willbelightingthenightorangeincelebration,be
suretostopby&shareaphoto!• It’s#WorldFSHDDay!Tolearnmoreabout#FSHDvisithttps://www.fshsociety.org/
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