EI Cure Project NeMuvambi Helen Lill www.EIcureproject.com
Chii chinonzi EI?
● Epidermolytic Ichthyosis (EI) chirwere cheganda chisingawanikwe chinogona kugarwa nhaka kana kuti chinogona kuitika choga panguva yekuzvitakura.
● Majini akabatwa: KRT1, KRT2, KRT9, KRT10 ● EI inoratidzirwa nekuputika uye kusasimba kweganda pamwe chete nekuwedzera kweganda kukura (Hyperkeratosis) yemajoini uye flexure. ● Iko hakuna mushonga, zvinokwanisika chete kuedza kugadzirisa marwadzo uye kusagadzikana nekugezesa kwenguva refu, exfoliation, kuchengetedza maronda, uye kushandiswa kwemafuta akawanda akasiyana.
www.EIcureproject.com
EI inobata sei hupenyu hwezuva nezuva?
● Ganda rinogona kukora zvekuti rinotadzisa kufamba
● Ganda gobvu rinodzivirira kubuda dikita kuitira kuti vanhu vane dambudziko vawedzere kupisa uye vanogona kunzwa kusanzwa zvakanaka kana paine tembiricha
Mapundu eganda zviri nyore: kubva pamipendero yezvipfeko uye mavara, kugara pachigaro chemotokari kana stroller, kana kungopisa zvakanyanya.
Ganda harina elasticity, saka rinotsemuka, kubvaruka, uye kubuda ropa kazhinji
●
●
www.EIcureproject.com
EI inobata sei hupenyu hwezuva nezuva?
● Ganda rinowanzokwenya uye rinorwadza uye rinogona kukanganisa kufamba uye maitiro
● Zvirwere zveganda zve systemic zvinowanzoitika uye zvinowanzoitika, zvinorwadza zvakanyanya, uye zvinogona kutyisa kana zvikasarapwa nemazvo.
Vanhu vane EI vanotaridzika zvakasiyana, uye vanowanzobatwa sevanoraswa munharaunda
● Kuchengeta ganda kunotora maawa maviri kusvika mana zuva rega
● Vanhu vazhinji vane EI vanoda tsigiro yekuremara kwehupenyu hwavo hwose www.EIcureproject.com
●
EI inotaridzika sei? www.EIcureproject.com
Kugara neEI ndiko…
“Kufanira kushandisa wiricheya nekuti tsoka dzangu dziri kurwadza”
"Kushandisa mudziyo wejecha wemagetsi kuti maoko netsoka dzevanasikana vangu dzirambe dzichishanda"
"Ndichinzwa mwanakomana wangu ane makore 9 okuberekwa achiti anoshuva kuti dai afa nokuti anovenga ganda rake zvakanyanya"
"Kutoita kuti mwanasikana wangu ari kuchema apfekedzwe zvizere mubhavhu nekuti zvipfeko zvake zvakasangana nemaronda ake"
"Kuita kuti vanhu vafunge kuti ndinoshungurudza mwana wangu nekuda kwekutaridzika kweganda rake"
"Kukura ndichisurukirwa nekuti munhu wese anofunga kuti ndini musikana ane ganda risinganzwisisike"
www.EIcureproject.com
Chii chinonzi EI Cure Project?
● Sangano Risingaite Mhindu
"Chirongwa cheEI chekurapa chine chinangwa chekuunganidza mari yechinangwa chakajeka chekupa rubatsiro rwekutsvagisa kubatsira avo vanobatwa neEI. Mari inogona kushandiswa ku pre-kiriniki uye tsvakiridzo yekiriniki nechinangwa chekutsvaga mushonga weEI”
www.EIcureproject.com
Chii chinonzi EI Cure Project?
●
Tine masangano matatu ari pamutemo asiri-e-purofiti muSwitzerland,America, uye UK
●
Tine gumi nevaviri bhodhi revatungamiriri vanoshanda
pamwechete mumasangano ese matatu
●
Isu tinewo komiti huru yenhengo dzinoshanda seEI
Cure ProjectAmbassadors ye26 nyika dzakasiyana ●
Tose tinomiririra nharaunda yedu yeGLOBAL, takabatana kutsvaga mushonga weEI
www.EIcureproject.com
Chii chinonzi EI Cure Project?
Kudyidzana kwepasirese pakati pevamiriri vevarwere, vanoisa mari, uye vanotungamira pasi rose vaongorori mukugadzirisa majini
○ Dr Julia Reichelt (Qatar)
○ Muzvinafundo Matthias Schmuth (Austria)
3 zvikamu (3-5 makore pachikamu, 10-15 makore akazara):
○ 1st Phase - Fund 3 PhD scholarship ye pre-kiriniki zvidzidzo
○ 2nd Phase - Kuitisa vanhu kliniki miedzo
○ 3rd Phase - Shanduko mukiriniki
●
●
www.EIcureproject.com
Chii chinonzi EI Cure Project?
● Chikamu chekutanga - Fund 3 PhD scholarships (£300,000)
○ Muchinjikwa-saiti yekutsvagisa nharaunda (Qatar neAustria)
○ Kutariswa naDr Julia Reichelt naProf. Matthias Schmuth
● Yakasarudzika Gene-editing yeKRT1, KRT2, KRT9, KRT10
○ Scholarship 1 - Gadzira CRISPR-Cas9 chishandiso-kiti kuti uwane uye kugadzirisa shanduko chero kupi mukati mejini.
○ Scholarship 2 - Ongorora uye gadzira mashandisirwo e-base-editing maturusi, ayo anobvumira gene-edit pasina kaviri-strand breaks.
○ Scholarship 3 - Gadzira in-vivo nzira inogona kushandiswa kumhuri
dzakawanda kubatsira kuderedza mutengo wekurapa
www.EIcureproject.com
Nei tichifanira kubatsira?
● EI inobata 1 mu300,000 vanhu, yakanyanya RARE, uye izvi zvinoreva kuti EI inonzi 'Chirwere cheNherera'.
● Mutengo wekutsvagisa unodarika purofiti inogona kubva kuchigadzirwa, saka hapana mari yekurudziro yekutsigira Pre-kiriniki yekutsvaga.
● Mushonga hauzombowaniki kunze kwekunge taupa mari isu pachedu
● Vatsvakurudzi vedu vanoziva nzira yekurapa EI, vanongoda mari yekubhadhara nguva yavanoda kuti varatidze!
● Kana data rehumbowo-repfungwa ravepo kubva kuzvidzidzo zvepre-kiriniki, rubatsiro rwekurudziro rwechirwere chenherera ruchabatsira kutsigira mutengo wekuedzwa kwekiriniki, asi rubatsiro urwu harwuvhare tsvakiridzo yepamberi.
www.EIcureproject.com
Sei kuisa mari muEI yekurapa chirongwa?
● Parizvino hapana marapiro eEI aripo munyika
● Iko hakuna mamwe masangano pasi pano anongotarisa kurapa EI
● Kutsvaga in-vivo gene-editing mhinduro yechirwere cheganda chinoputika
kwaizopembererwa nenharaunda yesainzi kutenderera pasirese.
● Kuona mushonga weEI kuchavandudza chimiro chekuchengetedza gene editing kune mamwe mamiriro, uye zvinozotungamira kugadziriso yehunyanzvi kune zvimwe zvirwere zve autosomal.
● EI chirwere chisingaperi chehupenyu hwose, uye mutoro wemari wakakwirira zvikuru. Nzira chete yekubvisa mutoro uyu ndeye KUSVIRA
mukugadzirisa magene kuti uwane mushonga
www.EIcureproject.com
Unogona kutibatsira here? Tinoda kupedza nguva shoma pakuchengeta, uye yakawanda nguva tichitamba! www.EIcureproject.com
www.EIcureproject.com
