Cure and Care for Labrune Syndrome

Our son Ekrem was recently diagnosed with a rare genetic disorder called: Leukoencephalopathy with cerebral calcifications and cyst (Labrune syndrome). This disorder consists of cysts, calcification and white matter in the brain. There is currently no treatment for this disorder and unfortunately it is a degenerative disease . There have only been 30-35 known cases with this disorder in the last 20 years.  Because of the rarity of this disorder, pharmaceutical companies do not allocate any funds for research. We are working with a great team at Children's National Medical Center in Washington DC. These funds will help us to fund the research to understand this disorder and help Ekrem and other patients with treatment and care options.

 
Biricik oglum Ekrem'e malesef cok ender gorulen bir hastalik olan Labrune Syndromu teshisi kondu. Bu hastalik, beyinde kistlerinlerin olusmasina, kalsiyum birikimine ve beyaz madde bozukluguna sebep oluyor ve maalesef zamanla ilerleyen bir hastalik. Labrune Syndromu, son 20 yil icersinde , butun dunyada sadece 30-35 kiside bulundu. Bu hastaligin bu kadar ender gorulmesi sebebi ile, ilac sirketleri arastirma yapmak icin hic bir yatirim yapmiyorlar. Su an Washington DC'de bulunan Children's National Medical Center'daki cok iyi bir ekip ile calisiyoruz. Bu sendromu laborutuar ortaminda yaratip, hastaligi daha iyi anlamak ve hastalara bakim ve (bir umit) tedavi olanaklarini arastirmak icin bir ekip kurma imkanlari var. Yardimlariniz bu ekibin kurulmasini ve arastirmanin baslamasini saglayacak.

Donations ()

  • Jen Gillespie 
    • $50 
    • 25 mos
  • Jeffery Horton 
    • $50 
    • 25 mos
  • Demetrios Okopny 
    • $100 
    • 25 mos
  • Derya Baysal  
    • $50 
    • 26 mos
  • Haluk Sahin  
    • $200 
    • 26 mos
See all

Organizer

Baris Agacbuken 
Organizer
Ashburn, VA
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