{"id":3342,"date":"2019-12-27T14:48:00","date_gmt":"2019-12-27T20:48:00","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3342"},"modified":"2021-02-19T18:34:05","modified_gmt":"2021-02-19T18:34:05","slug":"organization-cure-vcp","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/","title":{"rendered":"ORGAN\u0130ZASYON: Cure VCP Disease, Inc."},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

KURULU\u015eUN ADI<\/strong>: Cure VCP Disease, Inc.<\/p>\n

WEB S\u0130TES\u0130:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0https:\/\/www.curevcp.org<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> https:\/\/www.facebook.com\/curevcpdisease\/<\/a><\/p>\n

TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> @LostTexanInGA<\/p>\n

KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:\u00a0 <\/strong>\u00a0<\/p>\n

VCP hastal\u0131klar\u0131 ve \u00f6zellikle Paget kemik hastal\u0131\u011f\u0131 ve Frontotemporal Demans (IBMPFD) ile ili\u015fkili \u0130nkl\u00fczyon V\u00fccut Miyopatisi.\u00a0<\/p>\n

BIR ALT T\u00dcRE ODAKLANIRSANIZ, BIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR?<\/strong><\/p>\n

https:\/\/www.curevcp.org\/patient-registry<\/a><\/p>\n

Kurulu\u015funuz Kar Amac\u0131 G\u00fctmeyen bir kurulu\u015f mu? E\u011fer \u00f6yleyse, ne t\u00fcr:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong><\/p>\n

\u00a0 Evet, biz 501(c)(3) kar amac\u0131 g\u00fctmeyen bir kamu kurulu\u015fuyuz<\/p>\n

KURULU\u015eUNUZUN KURULMASINA NE I\u0307LHAM VERDI\u0307?<\/strong>:<\/p>\n

\u00a0Hastalar ve ara\u015ft\u0131rmac\u0131lar i\u00e7in VCP hastal\u0131klar\u0131n\u0131 organize edecek ve fark\u0131ndal\u0131k sa\u011flayacak resmi bir organizasyon mevcut de\u011fildi. Ben de bir hastayd\u0131m ve annemi bu hastal\u0131k nedeniyle kaybetmi\u015ftim ve ara\u015ft\u0131rma camias\u0131nda bir \u015feyler olmas\u0131n\u0131 beklemek ve umut etmek i\u00e7in bo\u015f duramayaca\u011f\u0131m\u0131 hissettim. Bir hasta pop\u00fclasyonu olarak, olumlu sonu\u00e7lar elde etmek i\u00e7in aktif kat\u0131l\u0131mc\u0131lar olmam\u0131z gerekiyordu, ancak en \u00f6nemlisi hasta pop\u00fclasyonunu tan\u0131mlamam\u0131z gerekiyordu.\u00a0<\/p>\n

KURULU\u015eUNUZUN MISYONU NEDIR?<\/strong><\/p>\n

Cure VCP Disease, Inc. Valosin Containing Protein geninin mutasyonlar\u0131yla ilgili hastal\u0131klar\u0131 tedavi etme \u00e7abalar\u0131n\u0131 y\u00f6nlendirmek i\u00e7in kurulmu\u015ftur. Buna Paget kemik hastal\u0131\u011f\u0131 ve Frontotemporal Demans (IBMPFD) ile ili\u015fkili \u0130nkl\u00fczyon V\u00fccut Miyopatisi hastal\u0131\u011f\u0131 da dahildir. Doktorlara, ara\u015ft\u0131rmac\u0131lara, yat\u0131r\u0131mc\u0131lara, hastalara, bak\u0131c\u0131lara ve genel halka VCP hastal\u0131klar\u0131 hakk\u0131nda k\u00fcresel e\u011fitim ve fark\u0131ndal\u0131k sa\u011flamay\u0131 ama\u00e7l\u0131yoruz.<\/p>\n

KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR:<\/strong><\/p>\n

\u00a0VCP hastal\u0131\u011f\u0131 hastalar\u0131n\u0131n k\u00fcresel bir hasta kayd\u0131n\u0131 tutuyoruz. Konferanslar, e-posta b\u00fcltenleri, \u00e7evrimi\u00e7i kaynaklar ve web seminerleri arac\u0131l\u0131\u011f\u0131yla hasta pop\u00fclasyonumuza umut ve e\u011fitim sa\u011fl\u0131yoruz.<\/p>\n

KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?<\/strong><\/p>\n

\u00a0Ocak 2018'de ba\u015flad\u0131k ve Nisan 2019'da VCP hastal\u0131\u011f\u0131n\u0131n a\u00e7\u0131l\u0131\u015f hasta ve bak\u0131c\u0131 konferans\u0131n\u0131 ger\u00e7ekle\u015ftirdik. Yakla\u015f\u0131k 60 hasta, bak\u0131c\u0131 ve ara\u015ft\u0131rmac\u0131 kat\u0131ld\u0131. Kaydedilen t\u00fcm oturumlar Cure VCP Disease YouTube kanal\u0131m\u0131zda mevcuttur.<\/p>\n

D\u00dcNYANIN KURULU\u015eUNUZ HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ<\/strong>:<\/p>\n

\u00a0Hastalar\u0131m\u0131z\u0131n \u00e7o\u011funa LGMD veya \u0130nkl\u00fczyon V\u00fccut Miyoziti olarak yanl\u0131\u015f te\u015fhis konulmaktad\u0131r. Do\u011fru te\u015fhis yolculu\u011fu, n\u00f6rom\u00fcsk\u00fcler hastal\u0131klar\u0131 olan bir\u00e7ok hasta i\u00e7in stresli olabilir. Amac\u0131m\u0131z, fark\u0131ndal\u0131k, e\u011fitim ve en iyi uygulamalar\u0131 te\u015fvik etmek i\u00e7in t\u00fcm yeti\u015fkin ba\u015flang\u0131\u00e7l\u0131 n\u00f6rom\u00fcsk\u00fcler kurulu\u015flarla ortakl\u0131k kurmakt\u0131r. Hepimiz hastal\u0131klar\u0131m\u0131z nedeniyle ayn\u0131 zorluklarla kar\u015f\u0131la\u015f\u0131yoruz ve hastal\u0131klar\u0131m\u0131z\u0131n bilimi farkl\u0131 olsa da, hepimiz bu i\u015fte birlikte olmal\u0131y\u0131z.<\/p>\n

\u0130NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?<\/strong><\/p>\n

\u00a0Hastalara, bak\u0131c\u0131lara ve bilim camias\u0131na ula\u015fmak i\u00e7in bir El\u00e7i program\u0131 olu\u015fturmaya \u00e7al\u0131\u015f\u0131yoruz. VCP hastal\u0131klar\u0131n\u0131n yayg\u0131nl\u0131\u011f\u0131n\u0131 bilmiyoruz ve daha fazla hasta belirlemek k\u00fcresel etkiyi anlamak i\u00e7in kritik \u00f6neme sahip.<\/p>\n

KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?<\/strong><\/p>\n

Web sitesi, Facebook grubu veya E-posta<\/p>\n

EKLEMEK ISTEDI\u011eINIZ BA\u015eKA BIR \u015eEY VAR MI?<\/strong><\/p>\n

\u00a0VCP hastal\u0131\u011f\u0131 ve belki de LGMD mutasyonu aras\u0131nda ayr\u0131m yapmak i\u00e7in anahtar soru kal\u0131tsal sorudur: \"Di\u011fer aile \u00fcyeleri kas g\u00fc\u00e7s\u00fczl\u00fc\u011f\u00fc, kemik hastal\u0131\u011f\u0131 ve\/veya bunama sergiliyor mu?\" VCP hastal\u0131\u011f\u0131 otozomal dominantt\u0131r ve \u00e7o\u011fu zaman aileden ge\u00e7er ve farkl\u0131 semptomlarla ortaya \u00e7\u0131kabilir. Annem, teyzem ve iki amcamda (6 karde\u015ften 4'\u00fcnde) VCP hastal\u0131\u011f\u0131 vard\u0131\/var. Mutasyonun ta\u015f\u0131y\u0131c\u0131s\u0131 oldu\u011fum i\u00e7in, yavrular\u0131m\u0131n etkilenme olas\u0131l\u0131\u011f\u0131 'dir. VCP geni art\u0131k \u00e7o\u011fu n\u00f6rom\u00fcsk\u00fcler hastal\u0131k genetik test panelinde yer almaktad\u0131r.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4384,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-3342","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Cure VCP Disease, Inc. - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/tr\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Cure VCP Disease, Inc. - 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