My name is Hayley Christensen. I work remotely from Raleigh, NC in Talent Acquisition for ICON. My whole world changed on July 7, 2015 when my beautiful and spunky daughter, Graysen, was brought into the world six weeks early. Due to her prematurity, it took 10 months to figure out that there was a greater issue. With diligent care from her pediatrician and the amazing contacts in the clinical research space; Graysen is a Cystic Fibrosis (CF) fighter. She was diagnosed as of May 19, 2016.

CF is a rare genetic disease that is progressive and terminal. In the US, about 30,000 people are living with CF and approximately 1,000 new cases of CF are diagnosed each year.

After her first bronchoscopy, Graysen’s pulmonologist found pseudomonas aeruginosa in her lungs and decided to admit her for a rigorous treatment plan to eradicate the extremely harmful bacteria. Thankfully, I can say, that due to clinical research and her extensive daily treatments, Graysen has not been admitted to hospital since.

Graysen每10周看到她的护理团队(肺病,营养师,护士,呼吸治疗师和其他人),以监测她健康的任何感染或下降。因为CF没有治愈,她有一个严格的日常治疗计划,包括每餐时的胰酶,吃高热量,咸味和脂肪食品,三种不同的雾化药物,以保持她的气道和肺部清晰,她有超过1小时一天穿着高频胸壁振荡装置。

尽管对CF没有治愈了(但是),但我很感谢今年能够参加她的第一次临床审判,这是一个对我们所见过的治疗最接近的调制器。我在今天提供的进步并对未来充满希望的敬畏。它确实是在临床试验空间工作的经验,也是从视角作为母亲到患者。

I love working for ICON and will forever be grateful for the clinical research aspect of my job and all the hardworking, dedicated professionals who truly seem to have a passion for not only Graysen, but everyone with rare diseases.