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As someone affected by muscular dystrophy, I am grateful for the support and resources provided by the Jain Foundation Inc. Their commitment to finding a cure and improving the lives of individuals like me is truly commendable. I highly recommend exploring their website, jain-foundation.org, for valuable information and support.
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Impressed with the website's user-friendly interface and extensive resources! 🙌🏼🔍📚
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Jain Foundation Inc: Disferlinopati Hastaları İçin Bir Umut Işığı
Jain Vakfı, LGMD2B, LGMDR2, Miyoshi Miyopati 1 olarak da bilinen disferlinopatiye bir çare bulmak için yorulmadan çalışan, kar amacı gütmeyen bir kuruluştur. Bu nadir görülen genetik bozukluk kasları etkiler ve ilerleyici kas güçsüzlüğüne ve zayıflamasına neden olur. Bu duruma disferlin proteinini kodlayan DYSF genindeki mutasyonlar neden olur.
Jain Vakfı, oğullarına disferlinopati teşhisi konduktan sonra Plavi Mittal Jain ve kocası Ajay Jain tarafından 2005 yılında kuruldu. Oğullarının durumuna bir çare bulmaya ve bu zayıflatıcı hastalıktan muzdarip olan diğerlerine yardım etmeye kararlıydılar.
Jain Vakfı, başlangıcından bu yana disferlinopatiyi anlamada ve potansiyel tedaviler geliştirmede önemli ilerleme kaydetti. Vakıf, bu nadir hastalıkla ilgili araştırmaları ilerletmek için dünyanın önde gelen araştırmacıları ile işbirlikleri kurmuştur.
Jain Foundation'ın en önemli girişimlerinden biri, dünya çapında disferlinopatili hastalardan klinik verileri toplayan Dysferlin Registry'dir. Bu kayıt, araştırmacıların bu hastalıkların doğal seyrini daha iyi anlamalarına ve hastalığın ilerlemesini veya tedaviye yanıtı izlemek için kullanılabilecek potansiyel biyobelirteçleri belirlemelerine yardımcı olur.
Araştırma çabalarına ek olarak Jain Vakfı, disferlinopatili hastalar ve aileleri için destek hizmetleri de sunmaktadır. Bu hizmetler arasında bu hastalıklarla ilgili eğitim kaynakları, sigorta kapsamına girmeyen tıbbi harcamalar için mali yardım programları ve bu nadir hastalıklar hakkında farkındalık yaratmaya yönelik savunuculuk çalışmaları yer almaktadır.
Vakfın çalışmaları, Disfelinopatiler üzerine araştırmaları ilerletmek için finansman desteği sağlayan Ulusal Sağlık Enstitüleri (NIH), Musküler Distrofi Derneği (MDA), CureDuchenne Ventures LLC., vb. gibi çeşitli kuruluşlar tarafından takdir topladı.
Sonuç olarak, The Jain Foundation Inc, Disfelinopatilerden etkilenenlere umut veren bir kuruluştur. Vakfın bu nadir hastalıklarla ilgili araştırmaları ilerletmek, destek hizmetleri sağlamak ve farkındalık yaratmak için yorulmak bilmeyen çabaları, hastaların ve ailelerinin yaşamlarında önemli bir etki yarattı. Bağışçıların, araştırmacıların ve genel olarak toplumun sürekli desteğiyle Jain Vakfı, disferlinopati için bir çare bulma yolunda daha da büyük adımlar atmaya hazırlanıyor.
jain-foundation.org
